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  • Kayleigh
    replied
    Hello again Jo Jo,

    In addition to having a local Regional Care Development Adviser (who works for the MNDA) your husband might also have an MND Co-ordinator (who works for the NHS).

    If your husband has an MND Co-ordinator, you might not have met them or been given their contact details yet (sometimes they are at MND clinic/hospital appointments).

    Contact details for the MND Co-ordinators are listed on the following webpage (under 'MND Care Centres and Networks'):-

    http://https://www.mndassociation.org/support-and-information/our-services/care-centres/

    Hopefully your local Regional Care Development Adviser will be able to answer any questions you have tomorrow but, if not, your husband's MND Co-ordinator might be a helpful person to contact as well.

    Best wishes,
    Kayleigh

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  • Kayleigh
    replied
    Hi Jo Jo,

    Your husband should automatically get appointments -but I found that it was helpful to contact my local Adviser soon after my diagnosis, to get an idea of who should be contacting me and approximately when. She also offered me advice on a range of other issues (including what local support the MNDA offers and the grants that are available from the MNDA).

    Love,
    Kayleigh
    Last edited by Kayleigh; 21 November 2019, 21:31.

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  • Jo jo
    replied
    Thankyou Kayleigh I didn’t know these advisers were local I will contact them tomorrow. I thought someone would have contacted us.

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  • Kayleigh
    replied
    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; 28 November 2019, 19:36.

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  • Jo jo
    replied
    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.

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  • Jo jo
    replied
    Thank you

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  • Terry
    replied
    Hi Jo Jo,

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

    Love Terry

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  • Ellie
    replied
    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.

    Leave a comment:


  • Jo jo
    replied
    Is the twitching killing more muscle if it’s more rapid. Some days his whole body including his nose is constantly twitching.

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  • Kayleigh
    replied
    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; 14 October 2019, 19:26.

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  • Ellie
    replied
    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.

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  • Kayleigh
    replied
    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

    Leave a comment:


  • Jo jo
    replied
    Thankyou everyone and thanks lynne for your advice. My partner is going to try and join this group tonight. It’s good to talk to people that know as he’s been recently diagnosed we really don’t know anything about MND. He is currently continuing to work. 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. I work to so it is hard to find the information or answers to questions we both have. We are still waiting to see the consultant at the hospital since his diagnosis.
    Thanks again to you all xx

    Leave a comment:


  • Terry
    replied
    Hi Jojo and welcome to the forum;

    Sorry to hear of your partner's very recent diagnoses and you both must be devastated. It will probably take a month or two to get your heads straight.

    Not all of us lose our voices but voice banking could be something to work towards.

    How is Mnd showing itself at the moment?

    Best wishes, Terry

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  • Lynne K
    replied
    Voicebanking is to save recordings of common phrases that gets worked on by technicians so that it can be downloaded to a speech program on an ipad. Then when an MND sufferer loses their voice they can use a keyboard or eye gaze control if no use in hands, to speak in close to their natural voice. Search for conversations on forums about it. Lots for you to read. Lynne

    Leave a comment:

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