COMMUNICATION IS SUCH A PROBLEM: My... - PSP Association

PSP Association

9,246 members11,345 posts

COMMUNICATION IS SUCH A PROBLEM

jillannf6 profile image
9 Replies

My communicaiton skills r getting worse-

Speech gettign more slurred and much too fast

i can think ok inside mj head then it all comes out much too quickly and even my nearest and dearest find it difficult ot understand me

The lee silverman voice treatment ha snto really worked

Tellephon e calls r becomjing a nightmare as peopel who i do no tknow just keep saying they cannot hear me

)(speech therapist coming to c me next week - fo rassistive tehcnology apps)

My typing is more dylsexic

Handwriting been impossible for 2 years +

jill

Written by
jillannf6 profile image
jillannf6
To view profiles and participate in discussions please or .
Read more about...
9 Replies
Fiona_McL profile image
Fiona_McL

Hi Jill

I'm sorry to see you seem to be going through the wars a bit recently.

We can understand you perfectly well, but I understand how difficult it it can be to make your voice understood. I'm sure the speech therapist will be able to help a bit, and you keep typing and emailing as much as you can. We're always here!

Fiona

Hi Jill

I know what you are going through. My husband had the same problem. The Parkinsons nurse arranged for him to see a Speech Therapist. She was very patient with him. It made such a difference that someone was taking an interest.

I hope you are as fortunate.

Regards

Lina

jillannf6 profile image
jillannf6

thanks fiona and lina

it is a real help that you know from 1st hand what the problems are!

i cannot be easily understood by friends now never mind strangers

and am reliuctant to use the phone as a means of communication

love jilll

in reply to jillannf6

Hello Jill,

My mother, an ex-teacher, once known for her beautiful diction, is also in the same boat as you - you are not alone. We have found various things have helped, including me making her a selection of little notes eg 'I have a problem with my speech. If you feel frustrated with me, please think what it's like for me!' , 'Please allow me TIME, to TRY to make myself heard' and that sort of thing (plus all-important humour). We have also set her up with an i-pad, so that she can now use 'Speak it!'. She types - very slowly - what she wants to say ( often in advance of a meeting) and then presses the things she wants spoken. It's made her feel much better about seeing people. It also works if held to the phone and my brother in the USA found it uplifting to hear her own words, even if not exactly her own voice ( we have chosen a voice closest to her own). We have each added some amusing sentences, so that she can use them for a giggle, if sitting awkwardly with someone. She is learning to email too..........most of the IT needs me sitting next to her, or helping her to set up (she is 87, bless her) but it's been quite a break-through.

I have seen her frustration and the look of sadness in her eyes, as her speech has deteriorated but now we have smiles and a feeling of triumph over adversity! I feel for you ..............however, you are obvioulsy fine typing - perhaps you could try some of these things, if you haven't already & remember to TRY to laugh your way through some of your problems....my mum & I collapse giggling TOGETHER at some of the things she accidentally comes out with...it helps us BOTH enormoulsy.

Chin up - we are all here. Bron x

SuzieQ profile image
SuzieQ

Hi Jill

Good luck next week when you see the speech therapist. I do hope she will be able to help you. Tony is still able to be understood but I notice that lately his voice has become very "thin". He speaks very quietly now and telephone communication is very difficult for him.

It doesn't matter that your typing has become dyslexic on here. We can understand you perfectly well. We all understand your difficulties so please continue to let us know your prgress.

We are all here for you and wish you all the best. You do incredibly well to be able to continue blogging on here and it is good that you are able to share your experiences of this illness with other people using this site.

Take care and God bless.

SuzieQ xx

ashav profile image
ashav

Hi Jill,

I have to say i am amazed to see how clear your thoughts are on the site. Thumbs up to you. Everything you have written is so clear . My father also had a problem with the deteriorating speech. what we did was gave him enough time to say what he wanted to and that made it much better. Take your time. you will find its better when you say things slowly. your near nad dear ones will understand what you want to say so dont stress yourself about it. we even told all his friends that when you ask him a question, give him time to reply. Dont rush him with he next question. Let you close people know that. Your typing is great. Telephone is passe anyway :) Keep writing to us. we understand very well and just dont stress .

hmfsli profile image
hmfsli

Hi Jill,

I am not too sure how you are fixed with social services provision in your area but you may be able to get a textphone to help you stay in touch via the telephone. Textphones are used by Deaf people and those who have difficulty with speech. You can connect to a relay service offered by BT (called Text Direct) so you type in what you want to say and an operator reads it out for the person you are calling. The operator then types back what the other person says or you can chose an option where you can hear what they are saying. This system has been around for a while now so a lot of places accept calls via TextDirect (formerly Typetalk). Your typing is great so you may find this helpful.

hmfsli

jillannf6 profile image
jillannf6 in reply to hmfsli

thanks for the suggestion hmfsli

i will see what is available

love

jill

Elli3 profile image
Elli3

Hi everyone , its great to hear how each of you are coping with communication problems. My husband is finding it very difficult at the moment, he is in a nursing home and not all of the staff give him time to express himself. His sight isn`t good and he is unable to look downwards he also has difficulties useing his fingers, I thought we might try using cards with key words, but not sure he could cope. Any suggestions very welcome, lv Elli

You may also like...

No communication

incontinent and eyes closed most of the time, so difficult with no communication but I told her it...

hope for communication

ones with PSP. who can.t communicate verbally any more or would the thoughts be so garbled that we...

Trouble Communicating

Extending Communication when Speech is Gone

mother is losing her speech very rapidly and can scarcely answer Yes/No questions any more....

Can an ipad aid communication?

recommendations for useful simple apps to aid communication? ..and do you feel there is much gain...