Speech

This is the worst part of ataxia for me. I wouldnt mind if it was just weird and slurred but all speech is so difficult but I don't know why. I can sing words of xmas carols but i can;t talk fluently . I can get some words out but I can't seem to string them in a sentence.What has happened to me over a year and my general co ordination is not too bad.How do you know when its plain ataxia and when it isn't? My speech is not particularly slurred but something makes it very difficult to speak.What is other's experience of speech as mine is not so much slurred as very difficult. I used to be such a chatterbox and now all I want is to be able to talk fluently again.I know I can listen more but I 'd like to be able to join in some conversations.

Marie x

This is exactly how I feel. If I was given a choice of regaining something, it would be speech.

I used to be a very social person and it pains me to not even be able to have a simple, clear conversation with someone.

What do you mean by "How you can tell if it's plain ataxia or when isn't"? Are you saying that you'd like to understand when your speech problem for e.g. are caused by the neurological condition as opposed to a glass or two of alcohol?

I am teetotal so it can't be that .It must be the neurological side but my speech is not slurred but I feel very breathless when I try to string words together. I know what you mean about conversation .Somepeople are very good and give me time but it is very hard to make ourselves heard.I can form words in my head but something makes it very difficult to come out .Is lack of co-ordination,breathlessness or a bit of both.

Marie

I guess what I mean to ask is does anyone else struggle with speech that is not slurred but breathless.??

Marie

I can get one or two single syllable words out clearly sometimes.. like hi, bye, yeah, no .. but when I try and speak longer sentences its a struggle to get all the words out, I'm assuming its cos it takes alot more co-ordination of breathing and speaking to keep breathing at the right times and carry on speaking for a longer time.

I also find when I try to speak it makes my involuntary movements increase from the effort of trying to speak so gets exhausting pretty quickly. It is frustrating cos by time I've worked up to getting a few words out or typed them out (on communication aid) the conversation has moved on.

I used to be a good signer, I wasn't born deaf but other deaf people often thought I was a 'native signer' that it was my first language but now as arms are affected more my signs are all jerky my arm doesn't always go where I want it to and I can see even fluent users of BSL trying to work out which movements I intended to do as part of the sign or whether that was just an involuntary twitch and not part of the sign!

I tend to just communicate mine and Inca's basic needs and that's it, it just gets too frustrating otherwise to attempt a 'normal' level of conversation and communication with people. sometimes I'd love more company but just the thought of the expectation to speak and make conversation all day with someone in my house is exhausting. Life gets very frustrating and lonely sometimes, if I didn't have Inca to keep going for, I think I'd have given up a while back.

Kati x

Hi Kati

Thanks for the email. I hadn't thought of trying to co-odinate breathing and speech. I know that I feel ok walking the dog but I like going out on my own with her and my rollator as I don't have to talk to anyone.Like you I can communicate with one or two words but stringing a sentence together is difficult.I think you are right ;it's not so much the co-ordination of speech itself but the breathing as well. The others in my group just have slurred speech as most have FA but I don't know if that makes a difference.It has only happened this last year so I am trying to come to terms with it.

I had a wifit for xmas .I have read your post about it but am a complete novice.Any hints to a technophobe.?

Marie

If you can message me with the bits you are finding difficult to understand?

just turn on wii and load the game and press the button on the balance board, you need to synch it with the wii console first, it tells you how in instructions, then its just a case of going through the exercises and games and working out which ones you can do.

is it wii fit plus you have with the extra games? If the game only requires you to lean left or right you can sit on the board instead of stand if thats easier and you're still working your core muscles and improving sitting balance.

Kati

What I have found has helped my speech is karoake.

hi Marie,

we all have to go over some obstacle. did you try speech therapy? what worked for me was reading an article out loud and try to articulate your words or parts of words.

i'm trying to relearn how to walk since i broke my ankle in 2010. i thought walking would come right back to me. nope. its not that easy.

Hi Lorraine

I had speech therapy and it was very good for giving me confidence.I can sing and read out loud but not string a sentence together.I think non ataxians take walking for granted.I can still walk but can't balance so without aid I cannot walk.Good luck with your ankle this year.

Marie

ps I think KatiLea has something when she says it could be breathing and talking at the same time.I mistakenly thought co-ordination was something different as I thought my co-ordination was good.Obviously not.

I have had speech therapy because I tend to choke. Speech is very slurred and its frustrating trying to get a message across

Though I would not say that I was ever a 'chatterbox', I do like to converse and it is important to me that I be understood in a conversation and that I understand others well.

So ... Speech is very important to me.

I have 'intermittent' speech problems. For the most part I can hold a conversation but now and again I can barely string two words together! I often have difficulties making myself understood because of slurring, sometimes breathlessness or fractured speech - the words do not come out properly. Sadly, my speech problems are getting more frequent.

For me, the issue with slurred, fractured or otherwise incoherent speech is exacerbated by my sheer frustration at not being understood. Can anyone say ‘vicious circle’? Sometimes, the more I try to be understood the worse my speech becomes.

The worst times, for me, to have these speech problems are when in a hurried situation such as getting on a bus or (nightmare of nightmares) in a supermarket checkout queue when paying and ‘holding up’ the line.

Having, or trying to have, a simple conversation with someone can be very frustrating when my speech ‘gives’ too. At such times, I tend to slow down and think more about what I intend to say or need to concentrate more on actually speaking. This in itself can cause issue though as people sometimes mistake my slowing as ‘talking down’ to them.

Most people that know me are very understanding, patient enough to let me correct myself or know enough of how I am to actually correct me in a positive way as we go!

The real problems start when I talk to people I do not know well or at all. I get especially frustrated when people that do not know me well take my speech problems as a sign of stupidity or drunkenness. (As it is, I do not drink alcohol now due to the medication I take and never was anything more than a moderate drinker).

Saying ‘I sympathise with you’ (Marie) can be taken in a negative way and sound somewhat demeaning or uncaring. In this instance though, I really do sympathise with anyone feeling bad about speech problems they have and understand just how negative these problems can make us feel.

As for 'How do you know when its plain ataxia and when it isn't?' - I do not! I do know that when other things are particularly bad - balance and coordination and such - my speech is particularly bad. So, there does seem to be a direct correlation!

Thanks for your message above.It's very frustrating trying to be able to talk.I find i get nervous on the phone and say ridiculous garbled incomprehnsible things. I have got one of those caller display things but usually by the time Ive staggered to the phone, dropped it as few times the caller has given up and gone. One cold caller even asked me to go and get an address.When I told him i was disabled and it would be an expedition he rang off. It gives me a lovely excuse not to talk to people i don't want to. Our phone bills are much cheaper now.

My speech is worse when my balance is bad.I would be pleased if my speech was slurred but it is virtually non existent that i could not understand.I like to understand things then I can cope . I'm not very good about accepting things without a scientific reason even though I have Christian faith. Good luck with the speech. I think it is more of a handicap not knowing what to say. I don't have any problems in that direction.

Marie

As some of you may know. i use a communication aid and am also deaf.


As I have knowledge of signing I can use that to help me but only helps if the other person can get it too!... some signs are obvious eg miming driving for car, miming drinking for drink, others like signs for.. what, about, why, when, fingerspelling etc people usually don't know unless they have learnt to sign.

My family never learnt to sign as when I went deaf (at 16) I still had normal speech.. I only learnt to sign to communicate with my friends who were born deaf and for whom it was there first language and also so I could use an interpreter to access university, medical appointments etc.

Sometimes if you meet someone who has either worked with people with speech difficulties or grown up with a family member with speech problems they are often good guessers and make the whole process alot easier! Other times you get someone who cannot seem to guess at all and only alternative is to type every single word out.. I was surprised once when one of these people was the guy who was assessing me for a communication aid!.. I would have expected him to know a little sign or have some experience of working out what people maybe saying but no... just as well he had brought a lightwriter with him as I had to type everything out except yes and no!

There was an article in a local grimsby newspaper about a woman who'd had a stroke and was stuck in spain with no insurance i think.. (so they couldn't afford speech therapy) her husband bought her a Nintendo DS with the Nintendogs game, and she has to speak clearly to the virtual pet to get it to sit etc, by time they managed to get back to UK her speech had improved! apparently she has horses and all kinds of virtual pets that she talks to everyday now and can speak better with her family.

I can't get the paste to work in these text boxes so I can't paste the link on here unfortunately.. I'll post it on facebook LWA group wall if anyone is interested.

Kati

Hi Marie - I've been to a few speech therapists - went from pointing on an alphabet board (now that was frustrating!) to speaking - not perfect, but I'll take it...unsure if this helps, but I had to work a lot on breathing to get vocalization...would taking deeper breaths and/or breaking your sentences into smaller phrases help smooth out your choppiness?

Marie Turner said:

Thanks for your message above.It's very frustrating trying to be able to talk.I find i get nervous on the phone and say ridiculous garbled incomprehnsible things. I have got one of those caller display things but usually by the time Ive staggered to the phone, dropped it as few times the caller has given up and gone. One cold caller even asked me to go and get an address.When I told him i was disabled and it would be an expedition he rang off. It gives me a lovely excuse not to talk to people i don't want to. Our phone bills are much cheaper now.

My speech is worse when my balance is bad.I would be pleased if my speech was slurred but it is virtually non existent that i could not understand.I like to understand things then I can cope . I'm not very good about accepting things without a scientific reason even though I have Christian faith. Good luck with the speech. I think it is more of a handicap not knowing what to say. I don't have any problems in that direction.

Marie

Hi Julie

Thanks for your response.It is good to know that things can be improved.I was a chatterbox once.I think it is my breathing which gets in the way of my speech because I am appartently clear ,do not slur as if I am drunk but all speech is very difficult and I don;t know why.All the others with inherited ataxias or Frierdichs seem to have a slur but mine is odd as I am fighting for breath .I would be interested to hear whaat you did to improve or manage.It is the flluency which has gone.The ability to form words is sort of there.

Marie

Hi Marie,

Your a smart lady! Yes your talking is due to your breathing. I just got done with speech therapy and that is what I was told and saw in myself. My breathing is what is making it hard for us to talk. I might slur a little bit. But I can not sing or tell a story or really even a sentence. If you breath like me. I breath backwards. i was a chatterbox to. But now I do a lot of listening! Speech therapy could help to let you know what to practice on.

Lori

I went for some sessions of speech therapy at my local hosp.Most were Parkinsons and a bit quiet but I had problems with volume and all the rest.But that was a year ago and my speech was much better then .I have got worse and it this abiluty I mourn the most as you still have all the ideas but when you come to talk you cannot do it.Funnily I can still sing but I think its because the words are slower.Although my breathing is not laboured it is not right .Posture seems to make a difference.Maybe I ought to go back to the speech therapist for some breathing excercizes.Certainly it doesnt feel slurred just very difficult.You have given me some encouragement.Thanks.

Marie

I've noticed my speech getting worse over time - I'm still understandable, but quite often I'll either slur words or the wrong thing will come out. I notice it more when I am reading something - trying to concentrate on what I am reading and speaking seems to be harder. And when I am talking conversationally I am slower in what I say - not painfully slow, but just more intelligible. My wife notices it a lot more than I do! I've seen a speech therapist - it seems that some sounds are harder than others for me. She had me read one line, and both her and my wife didn't have a clue what I said!

I guess what I am trying to say here (no pun intended) is that for me, going slower seems to work.


Hi BW - This is one of the strategies I use to try and be more intelligible. Mind you, I'm not too speedy with my speech to begin with, but slowing it down - and focusing on what I'm saying - seems to help others understand me. I don't always remember to do this, but I try to do it when I get that weird look, a request to repeat what I said, or inappropriate laughing when I wasn't saying anything funny.


BWGreen said:

I've noticed my speech getting worse over time - I'm still understandable, but quite often I'll either slur words or the wrong thing will come out. I notice it more when I am reading something - trying to concentrate on what I am reading and speaking seems to be harder. And when I am talking conversationally I am slower in what I say - not painfully slow, but just more intelligible. My wife notices it a lot more than I do! I've seen a speech therapist - it seems that some sounds are harder than others for me. She had me read one line, and both her and my wife didn't have a clue what I said!

I guess what I am trying to say here (no pun intended) is that for me, going slower seems to work.