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Thread: Communication methods

  1. #1
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    Smile Communication methods

    HI, New to the forum. My wife was diagnosed with PLS early 2011. We have been through the whole range of communication aids, all failing as time went by. Even tried Stephen Hawkings variety. Finally reduced to the Magabee with eye movement deteriorating.
    I have started a*blog at mndexperiences.blogspot.co.uk hoping others may be able to benefit from some our trials and tribulations in this stressful area of failing communiocation.

  2. #2
    Forum Member Terry's Avatar
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    Hi Blossom;

    Sorry to hear that your wife has been through so many different methods of communication so soon. You can post your experiences here but it's probably best to start a new thread with every different one that you have tried so that others can post there views on them.

    Regards 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.

  3. #3
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    Quote Originally Posted by Terry View Post
    Hi Blossom;

    Sorry to hear that your wife has been through so many different methods of communication so soon. You can post your experiences here but it's probably best to start a new thread with every different one that you have tried so that others can post there views on them.

    Regards Terry
    Thanks Terry I will take your advice. Sorry so long in reply ... only just seen it. Still getting the hang of these forums and blogs. Best wishes

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    Hi Blossom. Please forgive me but I have not got a clue what a magabee is? But you might be able to help me, if you wouldn't mind? My sister in law is 67 and has had MND for over 3 years. She is bed bound, unable to talk at all, fed with PEG and until this week, she has been using an ipad to communicate. It was really slow and hit and miss due to the spasticity is her arms and hands - but it did work to a degree, but now, she is unable to move her hands/arms enough to even get anywhere near the keyboard.

    When she was well enough to speak, she did not bank her voice, but I wondered if you could tell me of any technology that somehow uses just eye contact to communicate? I know its a long shot, but you never know. Thank you in advance. I will try to gert to your blog! But not the best with technology - Thank you

  5. #5
    Forum Member Terry's Avatar
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    Hi Dee;

    Here is a link to a Megabee, don't be worried about not knowing how to do things, Just ask:-

    http://www.liberator.co.uk/megabee.html

    Her speech therapist should be involved with things as she should be able to help in getting some things. There are Eye gaze systems that allow people to fully use a computer as well as for speech. It is quite slow but there are a couple of people that post quite often that use it here.

    You can also have a look at this:-

    If you have a windows computer or laptop your husband can give OptiKey a go for free using the mouse, or with head movement using a webcam. If he likes it I can help with choosing an eye tracker etc.

    You can download OptiKey, watch some videos, and read about how it works here: www.optikey.org

    It's completely free.

    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.

  6. #6
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    Dee.

    Mum used a Bluetooth mouse resting on a smallbook when she couldn't manage a keyboard. You can change the settings on any mouse to click with either the left or right if that's a problem. However you can also forget about the need to click at all and use "dwell clicker". This means if you are able to hover the mouse cursor over an onscreen keyboard for a few seconds the computer will select the letter. It's like the clock on Countdown without the music!

    Mum used an onscreen keyboard via Grid2, which also has predictive text so speed up communication. If you google both Grid2 and Dwell clicker you should be able to see how they work. Mum selected Fast Talker within Grid2 but there're lots to choose from.

    Good luck.

  7. #7
    Forum Member Ellie's Avatar
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    Wash your mouth out Mr Santa!! Eye gaze is NOT SLOW . I zip around various apps on my laptop and even do the grocery shopping online.
    It's much underused in our community imo. The new cheap eye trackers and free software makes it really accessible. I couldn't live without it.

    Love Ellie.

    P.S. Decided to put on this hat just for you.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member Barry52's Avatar
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    Loving the new avatar Ellie.

    Barry x
    Iím going to do this even if it kills me!

  9. #9
    Forum Member Steve's Avatar
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    I have done 9 page reports on eyegaze and got upto 20 words per minute. I am about to start XMAS shopping.

    It's deffo not slow.
    sorry about the absence of caps in my posts, my shift key is broken.

  10. #10
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    Hi Terry. Thank you for your information. I will pass it on to her husband. We definitely need something to be sorted, as she now cannot communicate at all, apart from moving her eyes up and from side to side. The loss of the use of her hands to use the Ipad have hit her terribly. Its like the last thing that she had has been taken from her. We skyped her today in hospital, and it took me all my time to not burst into tears, she looks so uncomfortable and frail. She has been virtually paralysed for well over 6 months, but could just about press the letters on the Ipad if someone 'jammed' a pencil thing in her clenched hand. I feel so useless and so sad for her. If love could make someone better, she would be one of the healthiest people in the world! I just despair. Not when I am with her or talking to her, but just when I am on my own! xx

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