SALT tips to improve speech - Any advice welcome.

[am2015]

My mum's speech is very limited now. I was wondering if we could share any tips to aid her, the SALT hasn't been much help. Mum has poor cognition as well now and she tends to repeat what is said. It is so difficult because she is really struggling to communicate and you can see the frustration in her face. Any advice would be really appreciated.

[easterncedar]

Your SALT has probably done this already, but here are what has worked for us. (To a point.)

Our SALT had us write 10 sentences that he would use often, and practicing them made it much easier for him to call them up when he wanted them. Even when they are not in context, they have become a useful speaking exercise. What's for supper? Let's brush our teeth and go to bed. What time is it? Do I have any appointments today? [Child's name] lives in [town]. And so on.

When I am getting him dressed in the morning we say two or three tough words - the same ones: "shipshape" is a favorite - and sounds : "ooooh" and "eee" - just to get his articulators limbered up for the day. We have a few jokes that I can use to get him going, silly endearments that he likes to repeat.

I'd definitely recommend that you work on yes and no AND thumbs up and thumbs down. Sometimes my guy has trouble with straight binary responses, and I wish I had seen that coming. It really takes coaxing for him to say yes and no.

It is all very frustrating and sometimes heart-rending, I know. Good luck. Love, Easterncedar

[abirke in reply to easterncedar]

B often shakes his yes or no. But it is so slight 1 mm or two, that I miss his answer. thumbs up and down works the best. We too have sentences to work on sounds created by two lips like M or B....these sounds very difficult for Bruce. As ec said get you some essential sentences...two or three words, and help your mum say these for exercise as well as communication!

Goodluck

AVB

[am2015 in reply to easterncedar]

Thank you very much for the advice I'll definitely try it with my mum.

[am2015 in reply to easterncedar]

Thanks for the tips. It's so difficult because PSP is progressing every day.

[Heady]

Sorry I haven't. Apart from learn another form of communication as quick as possible. Sign language, thumbs up or down and any others, while your Mum can still correct what you think she might have indicated. Wish I had done that a lot earlier.

Lots of love

Heady

[MidsDofCBD in reply to Heady]

Has anyone learnt some sign language ? Is it an option with dad having cognitive issues as well as loosing speech I wonder if he'd be able to remember it .

[Heady in reply to MidsDofCBD]

S only uses the very basic, thumbs up or down and he points to the toilet. After that I am stuck.

Lots of love

Heady

[Robbo1 in reply to Heady]

They are the important ones, aren't they? Isn't it frustrating trying to understand? B. muttered something to me a couple of times and when I said I didn't understand, he. ( almost) shouted, " use your brain!" It would have been funny if I hadn't been so tired. Instead I'm afraid I told him that if he made the same effort with me as he does when speaking to visitors, I would understand. He mulled this over for a bit and then apologised. I felt sad. That's life eh? Sending Big Hugs X

[Heady in reply to Robbo1]

When S was in hospital a few months ago, I went in and the nurse looking after him told that he had told her all about his family, about out house inSouth Africa. I sat there waiting for him to speak, thinking some miracle had happened and he wasn't even able to use his thumbs that day!!! They say we only ever use 1/10th of our brains. I wonder if the same is true for the neurons? If so, there are a lot, that may still be useful, that with the correct intensive treatment, our loved ones could get some of their faculties back. If good old adrenaline and change of scenery can make such a difference.

Don't suppose anybody is looking into that.

Sorry, got my "wanting a magic wand" hat on today.

Lots of love

Heady

[Robbo1 in reply to Heady]

I am sure you are right, Heady. Stimulation can cause improvement. The trouble is that looking after someone with PSP does not leave the time or the energy to plan exciting events all the time, does it? X

[Heady in reply to Robbo1]

No it doesn't. We are off to a wedding now, if I can wake him to dress him. Somehow I have to remember how to tie a tie!!!

Lots of love

Heady

[am2015 in reply to Heady]

I wish there was something like a magic wand. Wishful thinking. Mum does react better to new environments, but it doesn't last very long.

[am2015 in reply to Heady]

Mum really struggled with hand signals. We tried the thumbs up and down a she simply doesn't understand. We use laminated sheets, but even that is hit and miss.

[am2015 in reply to Heady]

Thanks for the advice, it's really hard because communication is such a basic thing and we are losing it fast.

[easterncedar in reply to am2015]

I sympathize with you about how awful the loss of communication is, and, sadly, even with decent speech therapy and exercise, it's going to happen. On a good day, though, I can see how much the work pays off, and every good day is precious. I also tried alphabetical cues and my sweetheart can't process them, so that wasn't helpful. If sign language could have helped, which I doubt, given the cognitive issues, we would have had to start learning it before he was diagnosed, I think.

One other thing: If you can find a video online about the LSVT Loud program, that is what some of what we do is based on.

Hang in there. Best wishes, Easterncedar

[am2015 in reply to easterncedar]

I think it's I've of the worst things about PSP, you lose all interaction with the outside world.

[jillannf6 in reply to easterncedar]

or singinG!

ic can still sing even though i find i difficult to speak ]

loll jill

xxxxx

[easterncedar in reply to jillannf6]

That's good to hear! Sometimes we sing together, too.

[am2015 in reply to jillannf6]

My mum's the same, she can sing along but has difficulty speaking. I heard a PSP seminar where the specialist said that singing/music belongs to a different part of the brain so people can sing but can't talk.

[jillannf6 in reply to Heady]

i agree thumbs, up,& down.is v good for general use with others outside

;loljill

xxx

[jillannf6 in reply to jillannf6]

same th prologue to go software is good on the IPAd

lol jill

cxxxx

[am2015 in reply to jillannf6]

We'll give it a go. Thank you. Xx

[Dizz58]

Mum is totally blind, has no use in either hand and insists on asking for things properly. By the time she's said 'can I have' she's lost it. I go through the list but it's always 'poo'. Ho hum.

[easterncedar in reply to Dizz58]

Oh dear. Really blind from psp?

[Dizz58 in reply to easterncedar]

No, EC she's had macular degeneration for 15 years. It was treated with laser in those days. She had a retinal bleed 4 years ago on one eye and only had peripheral vision in the other. Just over a year ago the neurologist she was seeing who insisted it was PD upped the dopamine, raising the intra ocular pressure causing acute glaucoma and taking out what was left of her sight. He went to a new job and his replacement took one look at Mum and said CBD.

[easterncedar in reply to Dizz58]

That's awful. I'm very sorry. It must complicate her own experience of the deterioration in ways I can't imagine, and the difficulty of providing care for her must be orders of magnitude greater than the challenges I face.

My guy sometimes appears to be blind, as his gaze is so fixed, and he feels with his hands for objects beyond his peripheral vision. A visiting daughter asked in the spring whether he had become totally blind, then went with him to his eye exam, where he read the charts clearly and easily, and she was gobsmacked.

He has episodes when he will say he can't see at all. Once he said he was blind, then said quite directly that the problem was that he couldn't understand or process what was in his field of vision. It frightens him, of course.

[am2015 in reply to Dizz58]

My mum is the same, she can't complete the sentence, starts but can't finish. Being blind must just further add to all the issues. All the best. Xx

[Dizz58 in reply to am2015]

Mum seems fairly happy with her lot. She thinks she can see and move and all sorts but is to all intents and purposes cognitively aware. It's a very weird disease, the brain is in some way 'I think' protecting her from the horror of her condition.

[am2015 in reply to Dizz58]

I completely agree. The only silver lining for us is that mum isn't always cognitively aware, a blessing in disguise.

[easterncedar in reply to Dizz58]

That's fascinating. The brain is capable of such amazing feats.