Losing voice!: I have had some speech... - Multiple System A...

Multiple System Atrophy Trust

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Losing voice!

Rodjc profile image
8 Replies

I have had some speech problems for about a year now, stuttering, slurring words and talking very slowly but recently my voice has disappeared completely a couple of times leaving me only able to whisper. This first happened about 10 days ago and then again yesterday, both times disappearing around midday but by the next morning it had recovered.

Has anyone experienced this? is this a symptom of MSA?

Thanks, Rod

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Rodjc profile image
Rodjc
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8 Replies
Schmall profile image
Schmall

Hi Rod.This is quite common with MSA. My husband has seen changes to his voice which are gradually getting worse. This includes clearing his throat a lot more, feeling that he permanently has something stuck in his throat and his voice becoming more hoarse. We are in the process of setting up voice banking (although it's slow going as I'm overwhelmed with carers duties and there is no one else and no other support).

If you're not registered with the MSA trust then I recommend you register and talk to them about voice banking. They may also be able to help with getting a referral for neuro speech therapy (also ask your GP for this). The waiting list for neuro services is very long though so it might be worth asking the MSA trust if they can recommend something in the meantime.

All the best

Rodjc profile image
Rodjc in reply to Schmall

Thank you for the reply, my neurologist has referred me for speech therapy, just waiting to hear from them. I had got used to speech being affected but was very surprised when my voice disappeared completely.

Sorry to hear you are getting overwhelmed with carer duties, is it possible to maybe contact a hospice or similar they may be able to offer day care occasionally which could give you a break.

Monkeyfeet1 profile image
Monkeyfeet1

so sorry you are going through this. Some great advice that I’ll be following too. Take care xx

chester2107 profile image
chester2107

glad to hear you are getting speech therapy , but also do the voice bank , my dad wouldn’t do either , so he didn’t lose his voice , but couldn’t understand what he was saying , so hard for everyone

love elaine

Fatwallet profile image
Fatwallet

Hi yes my husband is also experiencing difficulties with his speech. He did not want to do the voice banking.. It can be difficult to understand what he is saying at times and his voice does become very low, down to a whisper. We are currently trying out assisted communication equipment so thag he can continue to be involved. Best wishes Shirley

Amethystina profile image
Amethystina

Hi Rod

I too have this (also have MSA) but before I was diagnosed with MSA , I was, and still am under the care of my Parkinson's Clinic and had a referral via them for S.A.L.T aka Speech and Language Therapy which is really good I must say. I also was fortunate enough to be invited via my Parkinson's Centre for a monthly ZOOM meeting called Live Loud which is beneficial no end.

ReverendBadger profile image
ReverendBadger

Hi Rod, yes very likely MSA. the Speech Therapist will no doubt do several tests and advise.

I have had short epsodes of losing voice and symptoms are deteriorating every month. As expected with MSA, I was lucky in getting voice banking done a while ago.

Frenchoak profile image
Frenchoak

Hi Rodjc, it must be frightening and frustrating for you to have periods of time when your voice just doesn't work. I too have a deterioration of speech, not too bad at the moment, but certainly not how I used to speak! I've done my Voice Banking as recommended by my Speech Therapist. Her advice was to get on and do it as soon as I could, before my voice deteriorated any further. She explained that it's almost like a car insurance policy - it's there in the background if you should need it in the future! She recommended a system called Speak Unique - easy to find on Web, and she was able to secure funding for the process through the amazing MSA Trust for me. Again, details are on MSA Trust's website. It's easy to do (albeit a little time-consuming and tedious!). You can do at home, with computer, headphones 🎧 with microphone (£30 Argos!). Sentences appear on screen that you record at a click of a button & accept if your happy with it, or re-record if not! Speak Unique then smooth it out and the end results are really amazing - so much so, my husband called out from other room as he thought it was "me" talking! My speech gets worse throughout the day as I get more tired, and the more I talk, especially in group conversation it's really hard, so I'm glad I've "banked" just in case! To me it's really important that people are still able to understand me in the future and that I still sound like "me", especially to one of my sister's that's blind, but for all my family and friends, I think it's going to help. By the way, my speech therapist said is uses about 100 muscles for your voice to come out, so I guess it's going to be the same as our brains not making any other muscles work. Please consider your voice banking soon and push for action on this. Please ask anything else that I may have missed! Best wishes 🙂

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