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Thread: Progressive Bulgar Palsey

  1. #1
    Forum Member Walker's Avatar
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    Cool Progressive Bulgar Palsey

    Hi all

    I first noticed symptoms in January 2013, a change in my voice. this was followed by a series of hospital appointments, including a couple of M R Is.

    I was given the diagnosis Motor Neuone Disease about August 2013.

    Over the last year my speech has almost gone and swallowing Is very difficult. I have my first PEG meeting on 1st October 2014. I will let you know how I get on.

  2. #2
    Forum Member Alig2014's Avatar
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    Hi, sorry you find yourself here but welcome.

    This forum is amazing for support and advice. My friend Jean is waiting to hear about a PEG so please let us know how you get on.

    Alison x

  3. #3
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    Hi Walker. My story very much mirrors yours. Slurred speech and problems swallowing getting worse at the end of last year. Was diagnosed with MND in March and like you my voice has almost gone. Have an appointment to see a gastro surgeon on the 15 to discuss the fitting of a PEG. I wheelchair has been provided, but I don't need it yet. Do you use an iPad and Predictable to help you with speech?
    Best wishes
    Trevor

  4. #4
    Forum Member Walker's Avatar
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    Hi Trevor

    Well sort of but I have Android devices, I tried a Lightwriter Swift but found typing on it far too slow.

  5. #5
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    I am a Windows man and have an android phone, but I am very pleased with my iPad which I find so much easier to use than a conventional keyboard. Once you buy the speech app, if you later buy an iPhone, you can add it to the phone at no extra charge. I currently use a free program called "Free Speech" on my android phone, check it out.

  6. #6
    Forum Member Terry's Avatar
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    Hi Walker;

    Welcome to the forum. Your speech therapist should be able to get a lightwriter loan from the Mnda. I down loaded "Free Speech" on to my wife's cheep tablet and it is OK but has a woman's American voice.

    Best wishes Terry

  7. #7
    Forum Member Walker's Avatar
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    Continuing my story, today I had my first meeting regarding the P E G and my operation is tomorrow 2nd October more to follow.

    For speech I use a free app called "Say My Words" on my Galaxy Tab S and my Galaxy S3 phone.

  8. #8
    Forum Member Alig2014's Avatar
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    Wow that was quick.

    Good luck.

    Alison. X

  9. #9
    Forum Member Jock's Avatar
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    Good luck tomorrow Walker.

    Kind regards

    Jock

  10. #10
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    Good Luck for tomorrow Walker.

    Spring x
    Evil triumphs when good men stand by and do nothing.

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