Voice/speech

[gloerfeldt]

Hi, I've been diagnosed with Parkinsonism in 2016 and then re-diagnosed with MSA-P in 2020.

Amongst all the different symptoms, my voice/speech is suffering greatly. I see. a speech therapist and do regular voice exercises but my voice is getting worse.

I'd be interested in people's experiences with that problem, whether they could fix it, and how.

[Gill-C]

Might be worth looking into LSVT (Lee Silverman Voice Technique). Ask your SALT as in some areas the NHS offer it. I found it very good for improving the volume and clarity of my speech and how long I can sustain it. Not sure if it helps on slurring.

Also, if you haven’t yet done it, don’t forget to voice bank whilst you can through SpeakUnique. It’s possible to ask the MSA Trust for some help with the cost.

Good luck - retaining communication skills feels so crucial doesn’t it

[gloerfeldt in reply to Gill-C]

thanks, Gill-C. I've done voice banking with SpeakUnique/MSA trust, and I found another software called 'Elevenlabs', which can clone your voice from a recording and offers multiple languages. Pretty impressive! I've looked at LSVT, also. Sometimes, I can only get a whisper out. I find my breathing has changed as well. It's very frustrating if people don't understand what you're (trying) to say.

[Kaye31]

voice bank is a must!

My husband used an eye gaze - not successfully yet but his voice is loaded onto it x

[gloerfeldt in reply to Kaye31]

Thanks. It'd be interesting to see how he gets on with the eye gaze device.

[Derek1uk]

Fixing something that is being taken away like a lot of other things in a person who has this TERRIBLE condition may not be possible sadly. My wife was diagnosed with PSP in Jan 2023 then MSA in March 2023, between then and now she's been struck down from someone who worked 60hrs a week to sitting in an Armchair being cared for. Unable to write her own name or speak a sentence, swallowing is a another issue to the point where a yogurt is even troublesome. Speak Unique is good but it relies on typing, so if like my wife who has the shakes on top of her hands being fused then the eye option could be used.......but for my wife that isn't possible as her eye weep and as some of you might know the eyes wander and the words become jumbled. So now communication is being lost, what more does this TERRIBLE condition have to take away from our loved ones???

[gloerfeldt in reply to Derek1uk]

Sorry to hear that your wife's condition is progressing so quickly. Wishing you all the best.

[lotois]

Hello gloerfeldt. My wife’s MSA took exactly the same trajectory. We are now 7 years in and her speech has become extremely difficult/impossible to understand, which makes for endless frustration all round. To a degree we have been able to mitigate this with the help of our local Speech and Language Therapists who ‘banked’ her voice years ago. By using a programme called SpeakUnique they prerecorded her saying lots of words and phrases which they then stored on an iPad which was given to her so that now all she has to do is type in what she wants to say, press send, and her voice comes out of the machine saying the phrase. So slow, laborious, kills all spontaneity but at least she can still make herself understood. I suggest you do it as early as possible

Best of luck.

[gloerfeldt in reply to lotois]

Thank you. I've done voice banking with SpeakUnique but haven't used it much.

[Gill-C]

The loss of speech represents the ultimate isolation doesn’t it? As many others have said, even if one can work eye gaze or typing substitutes, all spontaneity is removed.

Speaking personally, I largely depend on dictation to type these days so, if I lose my voice, I lose most other options too

This is an interesting thread and everyone has clearly done considerable research to find ways of still giving themselves or their loved ones a voice.

[calebsmum]

My husband is in a similar position. We started with microphones, moved onto predictable programme on iPad with voice banking, but that is a real struggle now. We do a lot of ‘thumbs up, thumbs down’ questions but thumbs down is getting difficult. He’s been referred for eye gaze but I doubt it will work as he often struggles with his eyes too. We have tried all sorts of gadgets with prerecorded phrases, but he is a very intelligent man (was a GP) and what he wants to say is rarely one of the phrases.

[gloerfeldt in reply to calebsmum]

Thanks for your feedback. No ‘text-to-speech’ tool can replace a normal human conversation. It takes time to type what you want to say and your finemotors (lack of …) may prevent you from using such a tool. I came across ‘elevenlabs’ which I quite like (mainly because it’s multi-lingual) but I’m still learning how to use it properly.

[Monkeyfeet1]

This has been an interesting read. I’ve Banked my voice with SpeakUnique and have the app.