To talk or not.

[jomo]

Hi Matthew,

Hope this helps.

My partner has PBP and we have done the following:

We started with voice banking and used Model talker and Predictable. Not very effective and Predictable was £159. We then started using the free Apps and they were OK. We have recently been using Speech Assist which is the best we can come up with at the moment and we use a blue tooth speaker. The great thing about Speech Assist is that it has a bank of commonly used phrases that you can add to and a loud bell which tells everyone to stop and listen. It's the best we have found so far and works better on an IPAd. It costs £14.99 . We are constantly reviewing and looking for better stuff.

[denise]

Thanks everyone I shall sit him down and talk to him. If he gives his usual response I shall .

[matthew55]

Sadly I didn't like my voice, although others did. The problem isn't the voice it's the time taken to communicate and people's ignorance when confronted by disability. ☹️

[Kevinp2109]

Hi Denise

I am using Speakunique which has the repair function which costs £250 and you can download the app for free to use with your recorded voice.
In my case the cost was funded by MNDA.
My voice is slowly deteriorating so happy I have banked my voice before it gets too bad.
With the software you can create your own phrases and words that you more commonly use. These are stored for you to select rather than typing them.
Hope this helps.

Kevin

[matthew55]

Please be aware that in January this year I went to my GP as my voice had changed. Today those who know me cannot understand me. Time is not our friend. x

[denise]

hi ellie
i was only kidding. i love his voice really. just sometimes he says things that most of us just think about saying but because we are polite we keep quiet.
as yet the doctor hasn't brought up the subject of speech therapy so that is another one on my list. his voice is definately not what it used to be and i know if i bring it up with the doctor stephen will say, like he says everytime, i'm ok dont worry about me. then i wonder why i am trying to help him at all.
i looked at the portuguese version and they want E30 for joining so i might contenplate that one a bit longer. think i will contenplate the voice banking thing as well because it will be up to him to decide what he wants to do.
thanks for your help with everything ellie.
xx

[Stonehengeman]

Sorry to hear that, Matthew. I also have lost my speech., but I can still swallow. I had a tube fitted over a year ago but other than flush it every morning I have made no use of it.
To communicate I use a boogie board. I have not felt comfortable with using the computer for that purpose. With my family i use facetime .
Many business organisations have a "chat" option which I find very useful.

[Ellie]

Denise, if Stephen does lose his voice, you would give anything to hear him talk again (even if it's a complaint!!)

I know you're in Portugal but ask his Speech Therapist or Doctor about voice banking and text to speech Apps. Have you made contact with the Portuguese equivalent of the MNDA? Here is their website if you haven't already got it: https://www.apela.pt/

There are several voice banking options - here is the pricing for one of them, Acapela: https://mov.acapela-group.com/pricing/

Love Ellie.

[denise]

sometime i wish he couldnt speak, which i know is a horrible thing to say but sometimes...........! anyway i have heard you all speak of voice banking and i take it to mean that you record messages and then recall them by pressing a buttton. thats how i thought it went anyway. i know some people have done this and i have looked at the websites and that they are able to improve or fix the voice. so how much do these things cost? its just that it would be so embarassing to sign up and then it costs a horrible amount of money.

[Nettie]

My voice is just about on its last legs now very few people understand me now it’s so frustrating ☹️

[Lynne K]

I have still got a voice. I find it frustrating that my husband asks me to repeat what I’ve said very often, but he’s always getting lots of wax in his ears making him a bit deaf sometimes and other times almost completely deaf. It’s a reoccurring problem for him. So it’s a double problem. I have a lower voice and he can’t always hear me.My MND neurologist last Wednesday asked me to slow down because had trouble understanding my voice. It gets more slurred if I speak quickly. Lynne

[Ellie]

Is there a progression from soft voice to no voice?

Betty sitbon Not everyone will lose their voice but a high percentage of us unfortunately do 😥 The rate of speech loss varies, it took mine about a year to go from 100% to 0%, but everyone is different.

If he hasn't already spoken to his SLT about communication aids, now is the time.

Love Ellie.

[matthew55]

In my case I started by sounding drunk and very soon after like a mentally injured person. Now only a few people can understand my words and even with them I have to repeat. I hate people who say yes to everything and the ones who think because you can't speak you must be deaf!🤨 Oh and I haven't been able to raise my voice for months, a real pain as I used to go to football and sing for 90 minures. Happy Days. x

[Betty sitbon]

I hello everyone. My partner used to have the kind of voice that I would ask him to lower... it was loud... now I can barely hear him unless I am next to him. Is there a progression from soft voice to no voice? Thank you for sharing your experience

[Hayls]

aww Ellie, can, 't you make sounds at all. I didn't know this could happen. How devestating. I'm not going to up willingly. doh. give up willingly.