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  • Terry
    replied
    Yep, I get similar WoJim;

    Even had a young male doctor speaking very loud after I told him my hearing is very good, bless him. He did say sorry after I said it again. People mime, speak loudly and slowly. Tell Jim that they are all crazy. I'll have to get a boogie board, sounds fun.

    Love Terry

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  • Guest's Avatar
    Guest replied
    When Jim started going out by himself, he took his boogie board to write on.He would come home saying when he used it people would either write an answer back , or talk very loud.He always wrote , I can hear , just can't talk. We still laugh about it.

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  • Terry
    replied
    Hi Jo,

    I sort of expect people to think that I am mental, to be honest I would have probably thought the same. I do go out of my way to try to communicate with people.

    I normally use a Lightwriter and sometimes use a tablet to talk with. I can say some words sometimes.

    Love Terry

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  • murrjo1
    replied
    hi terry, no not yet she has just seen a speech therapist about a week ago for the first time and she suggested a picture book with everyday things in for her to point to to start off with so well see how that goes, she gets really upset when she cant get the words out and she says she wishes she has her voice back, also if we are out, she is in a wheelchair as she cant walk far, and she speaks people look at her like shes mentally ill and then ignore her and talk to me, i think any disabled person gets that, and the person is suffering enough without that. thanks for your responses, love jo xx

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  • Terry
    replied
    Hi Murrjo;

    Does your mum use any talking machine or ABC cards etc?

    Love Terry

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  • Jaxx
    replied
    Thank you, it does help. X

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  • murrjo1
    replied
    hi jaxx if its any use my mum started slurring her words as far back as early 2015, kept going to drs waste of time, being fobbed off and in late 2016 she kept saying to me i cant grip anything my hands feel weak, then in early 2017 she said she couldnt cough, from late 2016 she started having falls, i still didnt put 2 and 2 together and it was back to the drs, until a really bad fall in oct 17 and i insisted the drs do something, and then being diagnosed in dec with bulbar als, so hers seems very slow, even now she has good days were she can talk almost clearly for a sentence to bad days were she can hardly get the words out, especially when she is tired, i dont understand much of this disease, but it does appear to be slow progression although i do no everyone is different which is why no one can say what and when will happen next. hope this helps. jo xx

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  • Jaxx
    replied
    Thank you so much for your replies, my daughter has now joined the forum so hopefully she will ask you all for advice.

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  • Peteb856
    replied
    Hi Jaxx, I was diagnosed in October, as originally thought to have had a stroke (March 2017) as my speech was starting to slur. It has got worse over the few months and I have difficulty in being understood. I have a note pad and a card (credit card size) explaining my problem they are both from the MNDA via my speech therapist. I also received my IPad from the NHS outreach taem (EATS - Electronic Assistive Technology Service), it has a text to speech program "Predictive" which I have found quite good even on the phone. But as others have said you do tend to forget yourself sometimes and try speeking to fast, the sing has got bad but is a good laugh for my wife and I especially in the car. We both take every day as it comes with a sense of humour and positivity, we have to as we are over the moon to be great grand parents in August (we are only 61 & 62).

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  • Roewe
    replied
    Yes It was great news Kev, if I could skip I would have skipped out of there. . See you at the next meeting Maeve x

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  • kevin
    replied
    Hi jaxx
    Lost my speech 4 years ago . I do a no that everyone recognises but that's about it . Never argue any more you loose every time .

    I miss the spontaneity. I have to type everything now it's ok but I am still slow typists. I use I pad and speak it app in house . I always use it on a stand that down position is not good on my throat . When I am out I use Samsung galaxy mini pad because it's light .

    Two things I hate . People who finish off your sentences . Poeple who ask loads of questions while you are typing answer to first one then don't understand your answer

    Hey great news Maeve slow progress is like a get out of jail card

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  • Lynne K
    replied
    My diagnosis was recent. My legs went first and my speech started slurring around the same time as the fingers on my right hand have become weak and that arm is also a bit weak. Mine is slow degeneration so far. It does seem to be a common symptom. I'm going to do voice banking while I my voice is still understandable.

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  • MNDConnect
    replied
    Dear Jaxx,

    I am sorry to hear that your daughter has been diagnosed with MND recently and that she is experiencing difficulties with her speech.

    About nine in ten people with MND may experience speech difficulty at some point in the course of the disease. As fellow members on the forum have explained, it is important that your daughter is seen and assessed by a Speech and Language Therapist (SaLT) at regular intervals. I am pleased to know that she has an appointment coming up with the SaLT and that she is considering voice banking. A SaLT can help people explore alternative ways to communicate effectively.There are various communication aids which can be used to enable someone to communicate when their speech is affected by MND. These can range from the very low tech such as alphabet boards or communication charts to the very high tech such as eye gaze systems. We produce an information sheet on speech and communication support that explains this in more detail. Please see the following link to access this document https://www.mndassociation.org/wp-co...on-support.pdf Additionally, we have further information about voice banking on our website which you may find helpful, please see the following link http://www.mndassociation.org/forpro...voice-banking/ Also, as an Association, we do have grants wherein we might be able to offer a financial contribution towards the voice banking process. This would be a one off payment of up to £500.

    I do hope this is helpful.

    If you have any further queries, then please do not hesitate to contact us again.

    Kindest regards,
    Prachi

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  • Jaxx
    replied
    Thank you so much, I keep hoping to wake up! X

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  • Roewe
    replied
    Hi Jaxx
    yes there are times when I am unable to get the words out at all & it’s frustrating & very upsetting, it’s not surprising you both cry, it’s a huge trauma & you don’t know what is going on. As Terry says, he thinks he can still sing & say anything.
    In my head I still think I am going to speak normally & it comes out slurred & slow. Please don’t worry about asking any of us anything, we are all happy to help you & we all understand what you are going through.
    Maeve

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