Ataxia UK
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Problems of Communication

My wife is an ataxia sufferer - difficult to know when it began but at least ten years ago. She was finally diagnosed (in France where we live) in 2007/8 - type unknown. One major problem between us communication - her speech is quite slurred most of the time but also QUIET. It is difficult to talk in the house but almost impossible in the car. Has anyone else experience of this problem and found a way to help get round it. I have made a couple of enquiries but so far to no avail. (For info, her hearing is not 100% - she has two hearing aids - but this is not an ataxia problem - hereditory from her father.)

17 Replies
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Hi!

We have a similar problem in our house. I have SCA and my husband has a problem

with his hearing. In the past slurring was a problem for me, but now I think I just don't

project my voice well enough for him to hear. It's frustrating for both parties.

I have always had this, often I've thought people were ignoring me, or that I hadn't actually spoken at all!

People have such a variation of symptoms and how they deal with them, someone is

bound to have some tips.

best wishes

Beryl

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Thanks for your reply - good to know there are others out there! Bon courage

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Hallo Beryl,

how well can I understand you

It´s terribly frustrating : I have to repreat three times

everything and still my wife says "What"

There shoiuld be hearing aids that can be programmed

so that our partners could understand a slurring person.

Regards

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'hear hear' Jurgen!

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Hi

I was diagnosed around the same time as your wife with idiopathic cerebellar ataxia.

My speech is quite bad now, along with other issue's etc... Following a visit to Naidex in Birmingham in 2012, where I came across a company called 'SmartboxAT' who develop speech aids and software. I now use an iPad, soundPOD which does my speaking for me.

It is well worth having a look at their website as there are various options available etc...

If you look up Gridplayer from Smartbox on Google.

Hope this helps

Regards

Bob

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Thanks Bob for this reply. I will certainly look into the website.

Regards John

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I was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). My speech is slurred and voice intermittent (loud/soft). Sometimes my husband (as well as others) asks me to repeat myself, due to not understanding what I've said. Guess I'm use to this now....,ha! Mostly my husband, family and friends understand me, as they're use to me too! My hearing is somewhat compromised, but so is my husbands, therefore, we make quite a pair! ;o)

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I have the same problem as 210coetfemme - only I´m the

SCA-patient.but I think my wife´s hearing "is somewhat compromised"

There should be - with all those technical inventions - some gadget

e.g. software which could be uploaded to your partner´s hearing aid

Regards

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I use an iPad with Proloquo2go AAC app it's useful for appointments where I need to explain alot. There are cheaper/free apps that have a basic ability to speak out what you type but I found P2G completely customisable and have my own version (home page/categories etc) thats different to what you get when you download it.

Their latest update has a feature specifically useful for Ataxia and shaky hands where even if you hit screen with more than one finger it can work out which key you were aiming for which reduces frustration, deleting and re-typing considerably.

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I do not slur but have huge difficulties with speech now. I do not answer the phone anymore and dread having to speak to anyone.

I know what I want to say but I cannot.I will look into the suggested web sites.

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My wife (Ann) is deaf and just recently started to speak in a whisper. At first I thought it was just her deafness and that she could not discern the level of her own voice. She has Mitochondrial disease and this has affected her muscles. She has now just been in hospital because she had lost her swallowing reflexes and it this that has caused the whispering. She now has a peg in her stomach, to be fed by.

We find it difficult to communicate and have up to just recently used a white board for me to speak to her. It does not work the other way as her hands jerk and she cannot write at all now. The white board worked quite well if you can get the carers in the home where she is now living to use it. I do not have an answer as Ann is not tech minded and nothing seems to work.

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I would be grateful to know where to get the software from as I can't write , my speech is very bad and my typing is getting worse?

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Hi lindilu

Do you have an iPad?

Harriet

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no - but can get one,no problem.

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Hi

Sorry it has taken me so long to reply.

I love my iPad. I find it much easier typing on a touchscreen compared to a conventional keyboard. Also there are a number of apps that aid communication, for example speaking the text you type in. The apps I have downloaded are free (they are really just for exploration purposes for me as I don't have speech problems) but I think there are some more sophisticated apps that you need to pay for. (see Katilea'a post above). iPads are increasingly being used by Speech and Language Therapists and it might be worth asking their advice as to the most recent technology out there.

Best Wishes

Harriet

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I'm not sure if you was asking me where to get software from? I use Proloquo2go which I downloaded from iTunes app store. It is one of the more expensive ones but the company is a good one who specialise in Assistive Technology on Apple Devices (computers too).

If you can wait there is a text only version coming out for literate users later this year. which will not be as expensive as it does not need a large library of icons to offer user. There are several free ones to download in the meantime and use for basic speaking what you type if you can get an iPad first.

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Hi my ataxia affects my speech. Gets a little frustrating when I think i'my speaking fine but others don't understand. What I do is over exaggerate my mouth movements. It helps get words out..

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