Question about not able to speak

[Whelks]

Hi,would like to find out if everyone that has msa will eventually lose there voice?

[TK-67]

not necessarily - my mum is quite advanced and every day and even every hour is different, some days she struggles all day, on others she can be fine! Everyone's journey is very different.

[Yanno]

Hello, my wife Jackie is like Trudy's mum; some days is very able to speak but finds it much harder on other days/ times of the day. Losing one's speech does seem to be a very common thing with MSA and so I would plan for the worst but hope for the best. The MSA Trust is doing some excellent work with voice capturing at the moment, do have a look at their web site if this interests you.Take care, Ian

[writerinlimbo]

My husband started losing his within 4 months of diagnosis, gone entirely with 13 months. However his decline was extremely rapid and he has just died, 18 months after diagnosis.

[Whelks in reply to writerinlimbo]

Hi,very sorry to hear about your loss apresate your reply.

[bluenose100]

My wife had msa for 7 years the last couple of years She struggled to talk I got a chart with letters and numbers she was going to get keyboard to speak but sadly passed

[Honghua]

Hi, I dont know how it effects every one but my husband's voice became virtually a whisper. Not all of the time but most of it.Then the stammer started. So communication is difficult to say the least.

Even if your voice is still good I really, really recommend you voice bank it asap.

If the time arrives when you need a communication aide it will be similar to your own rather than sounding like Stephen Hawking's.

Don't wait for speech and language therapist to suggest it because they may not! Worse still they may know nothing about voice banking...

[Annietutt]

Hello.As others have said, each person’s symptoms and progression differ. My husband decided to bank his voice before his speech deteriorated too much. We used an American service, designed for children who were losing speech. It is called Modeltalker. They make a synthesized version of your own voice. We then downloaded it to an app called Predictable, which is very good. It allows you to store set phrases in your own voice as well as having a bank of useful phrases. You can also type phrases as you go. He has not yet reached the stage of needing it but practices occasionally so that he remembers what to do. We did the initial voice banking ourselves then his SALT came and helped to set up Predictable on his tablet and phone.

I think it was well worth doing, even if he never needs it ( although I think he will as his speech is now quite poor) as it has given him confidence to know that he will not lose the ability to communicate. I hope this is helpful.

[Annietutt in reply to Annietutt]

PS I forgot to say that even the set phrases and typing as you go are emitted with his own (synthesised) voice.

[Kitten1135]

My husband Nick's first symptoms were problems with his voice which then progressed quite rapidly. This made it impossible to bank his voice to use and he uses a female voice to talk to me which can be disconcerting. He is quite happy with it😂

[VegetarianWoman]

They cannot complete phrases and forget words so they go on losing speech.