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Thread: What Now?

  1. #1
    Forum Member Broostine93's Avatar
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    What Now?

    Hi,

    Are there any communication devices that aren't 'techy' (i.e. ipad) that aren't just the standard spelling boards?

    We're getting close to the point now where writing things down will not be a viable option and I don't think anything gadget-y will be taken to very willingly.

    Thank you!

  2. #2
    Forum Member Ellie's Avatar
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    Would your Gran's hands be good enough to type, Chrissie?

    There is something called a Lightwriter - here is a short video of it in use:




    There are lots of low-tech printable communication boards available online. You'd probably have to do a bit of research to find which ones would best suit your Gran, then print out some and laminate them (or make your own)

    This is an example of what I mean:

    https://saltillo.com/downloads/chat/...h%20blanks.pdf

    https://aaccommunity.net/wp-content/...n-MJ-symbo.pdf


    Has she access to an SLT?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Terry's Avatar
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    Hi Broostine,

    She has got the option of using some sort of tech thing and being able to communicate with most people or using boards type thing which is slow and limited to who you can communicate with.

    Some tech is a bit simpler than tablet computers but a lot more expensive. You probably have a tablet that you can download a talking app for her to try.

    Lightwiter's are a bit simpler than tablets.

    Get the speech therapist involved as they might be help with things and ideas.

    Love Terry
    Last edited by Terry; 30th October 2019 at 13:15.
    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.

  4. #4
    Forum Member Broostine93's Avatar
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    Hi Both,

    Thank you for replying

    The Lightwriter looks good- I'll have to suggest it and see what the response is. Failing that, it'll have to be the communication boards, I guess.

    I tried a tablet with a speech app a few weeks back with Gran- she wasn't interested in it at all, unfortunately (I'm not surprised- she wouldn't/couldn't even learn how to use the simplest of mobile phones!)

    To be honest, the SLT is rubbish. She hasn't been around for 3 weeks- even then, she's only just been 'forced' into advising the nursing home that Gran needs pureed food (after she'd been choking on nearly every mouthful of food for about 2 months beforehand and only even then because I phoned the palliative team with a massive list of concerns). The SLT has done nothing other than to say 'just continue doing what you're doing', regarding Gran's speech (even though she's been barely legible for weeks). It got to the point where Gran was so 'pressured/upset' by the SLT that the SLT told her she had a 'bad attitude' and Gran had to write to her to stop bullying her (I'm never there for the SLT visits as she goes during the day when I am at work, so I can't see what her behaviour is really like).

    Thank you both for your suggestions It's good to know there's a couple of options to try

  5. #5
    Forum Member MNDConnect's Avatar
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    Hi Broostine

    Ellie and Terry have given some really good suggestions. A lightwriter is quite simple to use and can be a really effective way to communicate that uses technology but isn't difficult to learn to use.

    I'm not sure what your Gran's hand dexterity is like. There is an aid called a Boogie Board which is a bit like an electronic note pad. You use a stylus to write on it and can click a button and it erases what you've written.

    With your Gran's permission, we'd be happy to speak to her SLT to help them to provide a suitable communication aid. We do have lightwriters which we can loan and if one would be suitable for your Gran then we'd certainly be happy to speak to the SLT to help her to organise this.

    Best Wishes
    Rachel
    MND Connect Adviser

  6. #6
    Forum Member Broostine93's Avatar
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    Hi Rachel,

    It would be brilliant if you guys could speak to her SLT to suggest communication aids. I think the lightwriter might be a hit. What details do you need from me?

    Thank you

  7. #7
    Forum Member MNDConnect's Avatar
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    Hi Broostine

    Please could you send me the SLT's name and telephone number by email to mndconnect@mndassociation.org or give me a ring on 0808 802 6262.

    If your Gran is happy for me to know her name and address, that would be helpful as well please and I'll ring the SLT this afternoon.

    Best Wishes
    Rachel
    MND Connect Adviser

  8. #8
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    I'm not sure if this has already been suggested - type out a list of often used phrases for Gran to,point to. Also I think MNDA have a fact sheet about this (I suspect Kayleigh will be good at accessing it).

  9. #9
    Forum Member Kayleigh's Avatar
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    This is a link to the MNDA's Understanding My Needs booklet (which I think Miranda is referring to?):-

    http://https://static.mndassociation.org/app/uploads/2017/05/19135707/understanding-my-needs-interactive.pdf

    And 'Amy's Speech Therapy' website which includes downloadable communication boards:-

    http://https://www.amyspeechlanguagetherapy.com/communication-boards.html

    Best wishes
    Kayleigh

  10. #10
    Forum Member Broostine93's Avatar
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    Thanks, guys

    Rachel- I've PM'd you directly.

    Miranda- I'd not even thought about doing something as simple as that (brain has a way of blocking out the simplest of solutions sometimes, doesn't it?)

    Kayleigh- Those boards are brilliant, thank you

    Thank you all so much

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