Speech: Hi folks, I am new to this site and... - PSP Association

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Speech

14 Replies

Hi folks,

I am new to this site and just saying hello. I will also add that I am so sorry that each of you has had the misfortune to need to visit this site; it's a cruel illness. I am currently caring for my 87 year old mother, who was diagnosed with PSP last year (after also having a mastectomy, following diagnosis for breast cancer, poor thing). She is brave, dignified and to date (with my on-going care and support), able to remain in her own home. She has had several falls but mainly forwards but her main deterioration has been her speech, which had become progressively slurred over the past few years (she is an ex-teacher and her diction and expression used to be beautiful, having dedicated many years to helping children learn to speak & read!) Her lack of clarity means that she can no longer speak to people on the phone, entertain a friend for coffee, or ask for anything in a shop. I can just about follow her but most people struggle and tend to shy away from trying to talk to her and I can see her sense of isolation increasing by the day. Her ability to write is becoming limited and she could not cope with IT now.

Have any of your found anything that has helped regarding speech problems?

Thank you.

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14 Replies
ray-wiffen-1958 profile image
ray-wiffen-1958

hi bron

Welcome to the site and im sorry that you are haveing

to go through this but your not alone, i was diagnosed

with cbd 4 years ago at the age of 49 and since then

my speech has been getting very quite and people keep

saying what you say or pardon so now my speech therapist

has put me forward for the lee silverman voice treatment

which is serposed to increse your volume of speech its

a tough treatment but you have to try these things ive

got a meeting in two weeks time with the SLT to talk it

through,

take care

ray

jillannf6 profile image
jillannf6

hi bron

i am in a similar position - was a teacherand my speech is now v garbled (my brain is still workign v quickly)

i have tried the Lee Silverwman method but i thas not really worked for me - i had to do it on my own wiht a neighbour's help

i know that i am frustrated when i cannot communicate with people and my handwritng became compelletely lllegible 18 months ago

my tying is dyslexic but at 65 years old i do not intend to give up yet.

i find telelphone calls v difficuylt and tend to start by saying that i have a speech problem and if they cannot understand me i shall start agai

always wi orse when stressed a is the falling

and reallly no answer other than not to get too frustrated! (says I )

jiil

PAT0 profile image
PAT0

my ex husband has psp and his speech too has become worse. He has a wonderful speech therapist, yesterday she bought an amplifier as Chris tends to whisper but he finds it very hard work, unfortunately I am unable to understand him now when he tries to speak to me on the telephone, it must be so frustrating for him and very upsetting for me as I have to keep asking him to repeat himself, I am so afraid that he will soon give up trying. I too would welcome any advice

Kathy profile image
Kathy

Hi Bron and Pat,

Have either of your relatives seen a speech and language therapist? They are brilliant and so full of useful advice. Your GP should be able to refer you quite easily.

I wonder if there is a connection between teaching and developing PSP?????? My Mum (diagnosed Jan 09) was also a teacher and also taught many, many children to speak properly and to read and write legibly. It is a great source of frustration to her that she can no longer read or write legibly or always string a coherent sentence together :-(

Idris profile image
Idris in reply to Kathy

My Mum was a teacher, too. It's so cruel that she was so incredibly articulate and not afraid to speak her mind, but is now getting more and more isolated because of her PSP.

Thank you to all of you for replying so compationately and helpfully. Yes, we have a speech therapist but there seems to be nothing she can add to my mother's own determined and creative efforts..depsite being a lovely & very professional individual. My mother has spent hours using a mirror, to watch her own mouth movements, to avoid becoming 'lazy', she also 'recites' poety, as she moves unsteadily around the house, or sits alone.............but no-one else would understand what she is saying. She has a joke where she 'shouts' (not really audible) at a friend of mine, when she helps do some cleaning! Her volume varies but the slurring is fairly consistent. She breaks down in tears from time to time but we try to 'laugh' when possible. I have made her some cards that explain her problems, which she can wave at people. I have added some humour to these. I try to have 3 way conversations on the phone, with her old college friends ( from war-time!) so that I can 'translate' for her. It can be quite jolly! However, we cannot forget the bleakness of the illness - so we try to live for each day. I told her that any one of us could walk under a lorry tomorrow & so it's each day that counts. We agreed that 30 years ago, she would have simply been descibed as 'getting old' and that's the way we treat things. However, my heart goes out to you younger victims, who cannot take this tiny consolation. All I can say is you really are not alone and that must make a difference. Thank you. PS excuse my typing - I don't look at the screen & there's no spell check!

Faiza profile image
Faiza

Hi Bron,

I struggle to understand my dad too as his speech is quite affected. Sometimes he has good days and other times, bad days with his speech. Speech therapy has helped as they gave him lots of exercises to do at home. Also, he struggles to grip a pen and also cutlery. We had the OT round and they provided these huge rubber handles to put on to cutlery to help his grip.

I've got an App on my IPad called Show Me and it's a whiteboard. My dad can write on it without using a pen and his writing is still remarkably clear on the iPad (on normal paper with a pen, it's a childlike scrawl). The iPad is also really good for brain training games as he just has to touch the screen. He can also type very well on it too.

Faiza

jillannf6 profile image
jillannf6 in reply to Faiza

hi faiza

i am htuinking of an iphone or ipad as i hav psp and speechand writing are so diffiicult now]

a programme 4 an ipad is proloque (or similar- can your dad use htis?

love jill

Faiza profile image
Faiza in reply to jillannf6

Hi Jill,

If you can, I would go for the iPad as the screen and keypad are much bigger than on the iPhone. I don't have that software on my iPad (as it's a work one- so dad only uses it when I come to visit). I'm thinking of getting one of his own, although my mum always misplaces things (Nintendo DS has been missing for the past year after mum put it somewhere safe).

You can get relatively cheap ipads eBay and if if you know someone going to America, might be worthwhile to ask them to get you one as they're considerably cheaper to buy out there than here

Faiza x

MovementPT profile image
MovementPT

Yes, speech problems are common in these conditions. You should have her see a Speech Therapist who can help with Augmentative Communication Devices that can speak for her. There are many devices out there.

Take care.

PSPA_JillL profile image
PSPA_JillL

Yes ask for a referall to speech and language therapist, as well as assessing for equipment they can look at strategies that may help with communication. Flash cards and letter boards can be useful as can home made individual photo albums with pictures of key thing that may be needed.

Thanks again for all your helpful comments regarding my mum's speech. I have contacted her speech therapist with one or two questions & will see where that takes us. My brother bought her a lovely wooden penguin when he visited from the USA, called Stuart ( my late Dad's name!) and she was stroking it today. I commented that it was lovely to feel & struggled to remember the right word.........'t...a....c...t....i....l....e'................she croaked & beamed at me, with her staring, beautiful, brown eyes.............& I remembered how it once was......... when she used to help me, as a young girl, with my vocabulary! She told me she wasn't going to get better, today............& we both cried & hugged.............then she rasped.........'but I have a few years in me yet!'

Thinking of you all.

MK-Speech profile image
MK-Speech

Hi Bron,

It sounds like you are caring wonderfully for your mum. Alternative and augmentative communication systems (called 'AAC' for short, and which basically means using something to supplement or replace speaking) can include paper-based materials like your cards, and alphabet boards, etc., and also technological devices. Many people are starting to use ipods or iPads with specific software or apps. It depends on your mum's ability to use her hands to type. I would ask your speech and language therapist to assess your mum's ability to use a keyboard. If she is able to type, there might be a few more options open to her.

A simple alphabet board could be very usefully used within conversation, whereby your mum can point to the letters to spell out a word that you cannot hear, or for her to give you a clue as to the topic first, which can then help you to understand her speech within the right context. Again I suppose it depends on your mum's eyesight as to how easy this would be for her to use.

Hope this gives you a few more ideas.

Best wishes.

in reply to MK-Speech

Thank you MK and all others, who have written to me. Lots of positive ideas here - Speech therapist visting on Friday - I will let you know how we get on. Take care. B

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