losing speech

Does the speech end because the patient CAN'T talk, or does it take too much energy? Four years since Frank was diagnosed, his speech varies from day to day, but I am so glad to say he is still the chatterbox he always was, and sometimes the words just tumble out from him. He is 90 this year, in a wheelchair, but still eating and drinking normally. I am thankful for each day, and sometimes believe the "experts" have given us the wrong diagnosis.

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  • hi kay1

    the speech problems i s a terrible one as my speech is mroe garbled and quiet

    i do not know hwen ishalll NOT be able to talk any mroe but it si partly a matter of using or losing it

    the muscles used do become a problem and i am nto openign my mouth enoguh when i do speak so cannot be understood

    and it cna take a lot of energy to speak anyway

    lvoe jill adn :-)

  • Thank you Jill - the best thing is that you still WANT to chatter and even if I don't always understand it makes me happy to know he want to talk.

    X ??? Jill just learnt how to do the hearts!

  • Hi Kay,

    Mum also "chats" a lot - even in her sleep sometimes! Sadly, these days, a lot of it doesn't make sense :-(

    I hope you and Frank continue to be able to chat. I suppose the speech is like a lot of the symptoms in PSP - everyone is affected slightly differently.

    Love to both of you

    Kathy xx

  • Hi Kay

    The reason why speech may become a problem varies from person to person. In some people it maybe due to fatigue, in some it maybe due to stiffness of the jaw and inability to open the mouth and in others it can be more due to changes in the areas of the brain which control language production or comprehension. Some people may also lose the drive to initiate conversation but will still be able to respond when asked simple questions directly.

  • Thank Kathy - in fact no cut and dry answers, Frank hasn't lost the urge to communicate and most times we do get to understand. Really I can't believe how well he is doing, age considered as well(90 soon). The care home not the perfect answer, but it certainly gives me peace of mind knowing there is always someone there for him. I certainly would not beable to manage at home.

  • Hi Kay -the speech is lost because the throat muscles become uncoordinated. Not every PSP person loses speech either. It depends on how the disease progresses for each individual. If your loved one is still speaking - -cherish it - -my dad lost the ability to speak and it was so sad - -he had so much to say but couldn't share it.

  • Thank you for all the comments, and had not given a though to throat muscles being uncoordinated, there is so much to learn all the time, really do appreciate the shared thoughts and information.

  • hi Kay

    i nwo have an Ipad and it has the prolque2go "app" which converts text to speech

    and it has a marvellous selection of what i might want ot ask for if and when i can no longer speak

    but i am techy (just a bit) and can ge tused ot the thing - if u are not compute rliterate it might be alilttle more difficult

    but age is no barrier

    lovej iill :-)

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