SpeechVive : I have SCA6, which means I tend to... - Ataxia UK

Ataxia UK

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SpeechVive

Kauri1 profile image
10 Replies

I have SCA6, which means I tend to slur and everything else associated with this issue. I was speaking to my speech therapist and she is recommending I look into a Parkinson’s focussed device called a SpeechVive. I do realise these are two different causes but in someways the end condition re speech is similar.

Has anyone come across such a unit focussed on Ataxia for speech improvement?

Thank you.

All the best

Jeremy

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Kauri1 profile image
Kauri1
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10 Replies
wobblybee profile image
wobblybee

🙂 This is recommended..

speakunique.co.uk/

What does SpeakUnique do?

SpeakUnique develop voice banking technology, that allows people to create a personalised synthetic voice for use in communication aids. This means people can retain their identity and communicate in a voice that sounds like their own, even when natural speech is not possible. Read more about our three different voice banking services and how we can help.

Kauri1 profile image
Kauri1 in reply to wobblybee

Thank you. SpeechVive though is not a speech banking system, it seems to assist with speaking correctly. It feeds a signal via bone conduction that tricks your speech, I think.

SueMillman profile image
SueMillmanPartnerAtaxia UK in reply to Kauri1

Hi Kauri1, following your post we are speaking to a speech therapy researcher with a specialism in ataxia to ask what is known about SpeechVive in respect of the ataxias i.e. has any research been done on it to see if it works for ataxia. I will post on here when we have an answer. Best wishes Sue Millman Ataxia UK

Tackeshi profile image
Tackeshi in reply to SueMillman

Hi Sue

Aswell as Kauri1, I would also be intrested to hear your findings. Also, does anyone no if the device is availible in the UK?

Thanks,

Kauri1 profile image
Kauri1

Thank you Sue, most appreciated

nigelrheath profile image
nigelrheath

I took part in a research study organised by Ataxia UK and run by Professor Anja Lowitt. This 4 week intensive therapy is based on work done with Parkinson’s sufferers and adapted to suit the slurring and lack of clarity in ataxia. Since then many friends and acquaintances have remarked on how much clearer my speech has become. Happy to talk more about this and zoom reaches New Zealand! My therapist was based in USA. Message me if you would like a chat.

Nigel

Maldrakes profile image
Maldrakes

Do you have anymore information on this? Any idea when the study will be out for the public to review?

Kauri1 profile image
Kauri1 in reply to Maldrakes

There is heaps on the net with respects to this unit and Parkinson’s with what it was intended for. There is little to nothing re Ataxia, hence this post. My speech therapist tends to think it could be of use and i would expect others already have tried it. Like a lot of things, a stab in the dark that may hit something useful. I get a unit in a few weeks, consider this maybe as a trial. Rather subjective I realise.

HarryB profile image
HarryBAdministrator

Dear Kauri1

Following consultation with a Speech and Language Therapist, the research department at Ataxia UK have written the following response-

Speechvive is designed to increase your volume. It plays a noise in your ear and you automatically raise your volume, as if talking in a noisy pub. It works for people with Parkinson's Disease because they have a sensory mismatch, i.e. they think they talk loudly, when they are actually quiet. Following some advice from a Speech and Language Therapist, we don’t think this would work for people with ataxia, because the hearing problems associated with ataxia are different to those with Parkinson's.

Best wishes

HarryB

Kauri1 profile image
Kauri1 in reply to HarryB

Thank you HarryB. I must admit I thought the same thing. The mechanisms for what affects us is different after all to Parkinson’s. I am still going to try as you never know. As they say “hope springs eternal”. Again thank you for the reply.

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