Speech: Hello there, it's been a long time... - PSP Association

PSP Association

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Hello there, it's been a long time since I have posted. Mum is in to her 6-7th year of PSP

Mum has totally lost the ability to speak but in stead she is constantly shouting just noise to speak. This is very upsetting as it's obvious that she wants something and yet it's so hard to find out what. Has anyone any tips etc as of ways you all communicate with your loved ones? Please help .

Mum is also experiencing a lot more pain , more than she used to, is this normal?

Her hands ave become closed and has guards on now to keep them open, which she wears 6 hrs a day, which help.

She is als experiencing symptoms of CPD which mum only has PSP , she has developed an "alien limb" but apparently people can develop a combination of both? Has anyone experienced this?

It's so hard seeing mum like this and sometimes think please god take her, please don't let her suffer no more, I just wish she could talk to me and tell me what she feels, wants etc

Love you mum x

19 Replies

Your mum has weathered PSP fairly well! I reread some of your old posts, and to think she was struggling with eating but does not have a feeding tube is amazing! You have taken fantastic care of her. God bless you and your mum ...With B this last year was very difficult to understand and since Janauary he had no ability to project what voice he had....I made an alphabet board and it helped...I would hold it , he would point to the letter I would say it and hopefully a word woudl be me made. He actually did quite well with it in the beginning...

You might try a letter/word and picture board with her....If you have an ipad or other tablet, they'll have something better than just letters scrolled on paper...



PS no alien limb was here

Bouganvillia in reply to abirke

A picture board is a great idea,


A drink for thirst.

Food for hunger.

A toilet for a pee.

An embrace for a cuddle.

Bed to show they are tired.


I bought my Aunt plastic/magnetic letters from the Early Learning Centre and a board, so she could move the letters and make a sentence to communicate.

Once she wrote nails paint! She wanted a manicure.

All the best.

abirke in reply to Bouganvillia


It's all lovely thoughts thank you. She has picture cards and a letter board but unfortunately she can not use either as she has lost the use of her arms now. So it's a very slow process trying to see what it is she wants. There are only so many picture cards etc. I just wish there was a way for her to tell me 😔

doglington in reply to steph75

I feel just the same with Chris. His vision is poor, hearing not good, speech uncertain. It gets increasingly hard on both sides.

Its heartbreaking.

love, Jean x

jillannf6 in reply to doglington

i agree jean o i cam still speak njtuyk partner says i whisper a d dcannot hear what i am syaign my typing is rubbish now as well so i cant ma tkemail anyone anh more ad the alakck of communivaigton means it is v difficult indeed =THANK GO DFOR PREDICTIVE TEDXTING1/1llol jill xxxxx

doglington in reply to jillannf6

I really feel for you all, Jill. You are so brave.

Keep it up.

Big hug from Jean xx

steph75 in reply to doglington

It's the hardest battle I've ever encountered god bless you all x

My Dad had a tablet set up by the speech therapy department - he used it to point to letters and could delete when he made a mistake and it had predictive words. He's not very technical but it was very basic and could be set up to not be too sensitive as his eyes and hands didn't co-ordinate well. It really was a big step up from the alphabet board which could be very frustrating when he'd point to the wrong letters or forget to point to 'new word' part and I'd struggle to make words out. His hands are not working so well now as he's had PSP for more than 10 years now, but he can still make words with the device at a push (takes more than half hour to make a short sentence though so patience is needed on all sides and it can be exhausting for him). We tend to stick to 'yes' 'no' questions and he can just about get a thumb up for 'yes' and a sideways thumbs for 'no'. I always ask if he's in pain but he never has been (except the broken bones in the early days). It might be worth pushing speech therapy to see what is on offer - things have advanced a lot over the last few years. Communication loss is one of the most painful things for any family - must be so incredibly frustrating for them to not be able to get across the most basic things. T x

jillannf6 in reply to chacha1

i agree

lol jiil


I have got a GO TAlk machine to record my husbands voice , so we can record a few phases so he can tell me if he needs any thing , or if he has pain. Also the little sayings we say last thing before we go to sleep.Ivor still has his speech , but sometimes struggles to speak when he's tired. I wanted to record his voice for the future , sounds odd I know but its my way of coping....Brenda

easterncedar in reply to Brenive

I saved phone messages from my sweetheart. I miss his voice. He still speaks a little, but it comes and goes. He has a very hard time, oddly, with simple yes and no answers, no matter how I ask him to respond. Thumbs up and down sometimes works, but the problem seems to lie less in the communication and more in the decision process.

Same here. Sometimes he just repeats my last words. Its really hard to know what he wants.

But the hardest is just not knowing what he is thinking. He was a man of many opinions. It must be crucifying for him. Its bad for me. I can at least express my frustration.


So similar. At least my guy can and still does say "I love you" to me and his children, all the time. I cherish every word.

So does Chris. So precious. The other day he called " Jean " . I was so astonished I rushed in . He said "I need a kiss "

He never is cross or irritable - thats me !!!

We use a GoTalk. It is a lifesaver. Check it out. Easy to use, they just press and you program it. Without Charles could not communicate at all. Everyone loves it when he uses it, makes us laugh since it's my voice that answers myself.


But surely a gotalk is too late for mum as she can no love ne'er talk?

No longer talk x

Thinking of you x

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