Frustration

I find it very difficult to speak.Words in isolation are fine but stringing a sentence together,well! In my head everything is fine. I seem to run out of breath rather than not being able to pronounce the words.It is very frustrating because I know want to say.what I thiink but can't. Most peoplc can't be bothered to listen or think I am drunk..It's very annoying. My speeh problem is a lot worse since the damage to the voicebox sustained during my recent operation. I find myself avoiding people and conversation of any sort but I will have to be careful of becoming isolated.

I find the difficult speech the worst part of ataxia to deal with although the rest of our problems are not easy

Take care

Fifa.

27 Replies

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  • Hi Fifa

    My speech is OK at the moment but I have noticed increasing difficulty in articulating some words. The words seem to run in to each other and I am aware of having to speak slower and concentrate on my breathing to compensate for this.

    Have you seen a speech and language therapist?

    Harriet

  • Hello HarryB

    Thank you for your reply.I hope your speech remains constant. I have seen a speech therapist but due to the damàge to the voice box I have reached the end of the line Never mind I shall have to work at it.

    Take care

    Fifa

  • Hi Fifa,yes this is what is the most awful part for me also.

    I know the rest is awful too but the speech! i find comunication is so bad that i find myself not bothering to try and speek. I also think im assumed at having learning difficulties,which we DEFINITELY have not. Sorry if i sound very negative but im finding this damn condition so hard to deal with!! xx

  • Hello Scorpio

    Thank you for your reply.

    I too struggle with this condition,it really annoys me. Still one thing is certain,we have ataxia and all it brings. nothing will change that, we must manage as best as we can.However, coping and remembering are two different things!!

    Taake care

    Fifa

  • Hello Scorpio

    I can't get my head around it eiither.

    RB

  • My speech isn't to bad either but I do have problems putting certain words together. Speech Therapist told me it was due to ataxia but I don't slur my words like some people I know who have ataxia. Its much worse whenever I'm feeling uncomfortable during certain conversations with others.

  • Hrelo Iain

    Thank you for your reply. I am glad your speech is not bàdly affected. I hope it stays that way. I have no problem in choosing or forming words,I just can't say them!!Still never mind, 'twas ever thus.

    Take care

    Fifa

  • My speech is getting increasingly worse, slurred and I have breathing problems. I do try hard not to use the phone because I know it is easier if people can read my lips too. It has been very gradual. I did not notice it at first and was quite disappointed and shocked at my annual check-up, when the neurologist said it had got worse. In my head things are not that bad! I am a 'quiet' speaker and do have the bad habit of putting my hand in front of my mouth, and so have tried to stop that.

    My family and close friends know I am not that clear and so wait for me. Try to make yourself say as much as you can. I find slowing down and trying to take a deep breath to start with helps. It is fairly unpleasant for others, especially the dog, but try to sing and hum along with the radio. May be try reciting or reading out loud every day. It is the old thing of use it or lose it. The more I speak, the better I get.

    It is VERY frustrating though! Good luck : )

  • As well as finding it difficult to pronounce some words together, (which I feel is only a minor issue) I tend to forget important words during conversations. I have to think hard sometimes to find the word I'm looking for or try and find an alternative word with the same meaning. Its so frustrating!

  • This is the same for me Iain! I Talk quite clearly and don't think I slur but am often in the flow of conversation when I forget a key word and have to talk around it ('one of those things that does... and you use for ...) Isn't it annoying when no-one tries to help you out either, but just looks at you as though forcing you to find the right word is a help! That's my experience anyway!

  • This also is the hardest part for me.I can cope with movement difficulties but i find it very hard to speak.I do not slur but find it very hard to speak.It is very isolating.II dont do social occasions now for that reason .I used to be such a chatterbox.I put a bit about my difficulties with speech on the Living with Ataxia website.You have my sympathies.This seems a double disability that few understand .I certainly dont understand the speech side of things but I know that the movement is a result of cerebellar degeneration.I can accept that but not the speech as well as i dont slur like the others.All I know is I find it difficult to talk hence how I understand t he frustration.

    Marie

  • Hi there, i too find this speaking thing hard to deal with,yes it is very isolating,i dont like to speak on the phone if i can help, family seem to understand somewhat but if we havent anything to show,like a broken leg/arm, people assume we are ok,might be on the outside but inside is a different matter eh? Yes Marie,seems like we have a DOUBLE disabilitiy! take care.x

  • my speech is not to bad at present but it does deteriate due to tiredness or stress then i find it difficult to make myself understood i try to rest as much as possible but then boredom takes over and i get down i try to look at it as a journey my body is going on and look on the bright side but somedays are harder than others

  • SNAP,exactly like me.Im not used to doing nothing,when fatigue gets me i get angry and frustrated!x

  • My speech and writing is awful. Currently due to missing front teeth [fall]. About a year ago, I was being prepped for augmentative equipment. However, 9 months ago I was given a young SLT, who introduced me to NHS loud therapy, [similar to LSVT] she worked with me on a weekly basis and I also had to practice every day. Breathing and speaking slowly were prerequisite.

  • I sympthise! My normally very neat handwriting is now unreadable, and due to chest/lung problems, I too run short of breath before reaching the end of a sentence of poor speech. Fortuntely I have a very determined therapist.

  • my hand writing is almost illegible too. Ihave had more information from this website than I received from my GP or a Neurologist. It has not bee suggested that i see anyone else. My GP has said he will refer me to a

    rehabilitation centre as it becomes neccessary.I find this a very unsatisfactory

    arrangement. When I saw him last he said to come back in 6 months but then

    decided perhaps would be better.I arranged a course with a phsycotherapist

    because of depression [ I arrainged this myself as I had been offered drugs which I declined] Altogether, I think,I am on my own and have to cope as well as I can.

  • Hi red bertie

    What is LSVT?

    Harriet

  • Hello Harry

    I did put together a fairly comprehensive reply, but as with so many things these days, I pressed the wrong knob and it disappeared. I will do it again later. RB

  • Thanks RB-no rush. By the way I have total sympathy with you about your teeth. I did the same thing a few years back and ended up spending hundreds of pounds on dental treatment. A painful and expensive injury.

    Harry

  • LSVT (american origin wouldn't it just be) is the Lee Silverman technique. It is copywrited world wide, has accredited practioners and is expensive to undertake, which is (I think) why the NHS have their watered down "loud therapy". You can Google LSVT. It was first successfully used with Parkinsons patients to help their speech, I believe (again patented) they have now introduced a physical aspect known as BIG. RB

  • Speech ,writing and movement have all deteriorated recently.I find the evenings worse.I don't feel tired but the brain must be fatigued.So I adapted and sit and do something which doesn;t require speech or movement.It;s not nice not being able to do things but we have to adapt.Do something nice that you enjoy.Just realised I sound harsh but it is frustrating I know.No falls yet but lots of near misses.

    Marie

  • Hi everyone here is a tip that I sometimes find helpful when speaking to a stranger, because most types of ataxia are not immediately obvious to others

    ======================

    before you start make it obvious to the other person that what you are about to say is difficult for you by sort of struggling for breath first, this draws their attention and makes them listen and be more understanding

  • I feel exactly the same as you about speeking! I find this the hardest part of this damn condition. Comunication is so very hard isnt itr?

  • Looking at this site makes me glad there are people who understand exactly how I feel and that we are quite "normal"

  • Hi everyone ,im caroline and new to the site i havent Ataxia myself , my daughter has and her speech has been effected also she is only 3 years old and as you can imagin she gets very Frustrated!! She can only say a few words at the moment and we are teaching her Makaton, I find also that when she is tired that she doen't want to talk, bless her :)

    Think it gets too much sometimes and she gives up in the end.

  • Hi everyone,

    ever since my retirement some ys back I speak German

    most of the time - a language the " glottal stop " ( it´s obstructing

    airflow in the vocal tract. particularly in the North) of which

    is quite frustrating for people suffering from SCA.

    Speech therapy helps.

    Speaking English is a relief, I feel

    Regards

    Jurgen

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