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  1. #11
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Jo jo View Post
    What is voice banking
    Hi JoJo

    The following information on the Mnda website might be useful

    http://https://www.mndassociation.org/support-and-information/living-with-mnd/speech-and-communication/

    Best wishes
    Kayleigh

  2. #12
    Forum Member Ellie's Avatar
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    Hi JoJo,

    I wonder if it'd be worthwhile you ring the MND Connect Helpline who could talk you through things?

    They are open Monday - Friday from 9am-5pm & 7-10.30pm. Phone number is 0808 802 6262

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

  3. #13
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Jo jo View Post
    Does anyone know if we can get a mobility car for him as his legs are getting weaker but can still use them at the moment. A mobility car with hand controls would help loads. He wants to continue to work as long as he can.
    Thanks again to you all xx
    Hi JoJo,

    To be eligible for the Motability Scheme, your partner would need to be in receipt of 'higher rate mobility allowance' - which he might be able to apply for as part of PIP (as long as he hasn't reached state pension age yet).

    Motability Scheme:-
    http://https://www.motability.co.uk/about/how-the-scheme-works/

    PIP (Personal Independence Payment):-
    http://https://www.gov.uk/pip

    The Driving Mobility website (includes how to get advice about vehicle adaptations):-
    http://https://www.drivingmobility.org.uk/about/

    Kayleigh x
    Last edited by Kayleigh; 14th October 2019 at 20:26.

  4. #14
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    Is the twitching killing more muscle if itís more rapid. Some days his whole body including his nose is constantly twitching.

  5. #15
    Forum Member Ellie's Avatar
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    Not necessarily Jo Jo.

    Sometimes fasciculations / twitches are increased because of external factors such as fatigue, stress or temperature.

    If possible, try to see that he's well fed, hydrated, rested and wearing comfortable clothing.

    Some people find that Riluzole or CBD Oil lessen twitches, others don't....

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

  6. #16
    Forum Member Terry's Avatar
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    Hi Jo Jo,

    They are annoying to more than anything else. Perhaps annoying isn't hard enough.

    Love Terry

  7. #17
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    Thank you

  8. #18
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    Does anyone know how long after diagnosis do you get to see any specialists. My partner was diagnosed on 2.10.19 and we are still waiting to hear from what the consultant called a team he will have round him. He carnt drive now as he is struggling to move his legs between the peddles so can no longer work. I feel terrible as I still have to go to work and leave him at home alone.

  9. #19
    Forum Member Kayleigh's Avatar
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    Hello Jo Jo,

    It's good your partner's consultant mentioned a team because that could be a Community Support Team (possibly including an OT, physiotherapist, Speech & Language Therapist and Dietitian) - and your local Regional Care Development Adviser should have knowedge about what services are provided where you live (and she/he might be able to find out how long your husband will have to wait before he has his first appointments with them).


    If you havn't done so already, perhaps get in touch with your local Adviser (or, if you phone MND Connect, they can ask your Adviser to contact you, if you would like them to):-

    Information about Regional Care Development Advisers (including their contact details):-

    http://https://www.mndassociation.org/support-and-information/local-support/mnd-regional-care-development-advisers/

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 28th November 2019 at 20:36.

  10. #20
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    Thankyou Kayleigh I didnít know these advisers were local I will contact them tomorrow. I thought someone would have contacted us.

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