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    #16
    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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      #17
      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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        #18
        Thank you, it does help. X

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          #19
          Hi Murrjo;

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

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #20
            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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              #21
              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
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

              Comment


                #22
                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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                  #23
                  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
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment

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