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  1. #21
    Forum Member Kayleigh's Avatar
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    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; 21st November 2019 at 23:31.

  2. #22
    Forum Member Kayleigh's Avatar
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    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

  3. #23
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    I have just spoken to a lovely lady on that contact number and she is going to get someone to call me on Monday. She said we should have heard something by now from the team. Thankyou for the advice.

  4. #24
    Forum Member Kayleigh's Avatar
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    Thanks for the update Jo Jo. I'm glad someone is going to phone you on Monday and hopefully that person will be able to chase up the appointments for you.

    Best wishes to you and your husband,
    Kayleigh x

  5. #25
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    Thankyou Kayleigh all the best to you xx

  6. #26
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    Received a call today from an OT to book first appointment still no news from anyone else they said we would get a call on Monday just gone. O well atleast something is happening now.

  7. #27
    Forum Member Kayleigh's Avatar
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    Hello Jo Jo,

    It's good that, at last, the first appointment with an OT has been arranged.

    Hopefully you will be contacted about other appointments soon.
    There might be a few other specialists working in the same Community Team as your partner's OT e.g. a physiotherapist, dietitian and speech & language therapist (but your local Regional Care Development Adviser should know).

    Was it your local Regional Care Development Adviser who was supposed to phone you on Monday? I expect it would be ok for you to make contact with him or her, if you would like to. Links to contact details for all the Advisers are provided at the end of the following webpage:-

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

    Best wishes
    Kayleigh x

  8. #28
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    Hi all, my partner has had his first fall today. Absolutely heartbreaking. Heís using crutches but heís finding it hard to lift his right leg as his foot folds under and trips him up. First OT appointment on the 18th Dec. He was only diagnosed in October it seems to be rapidly disabling him. Does this usually mean he will loose use of his arms then his breathing this is so scary.

  9. #29
    Forum Member Lynne K's Avatar
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    Hi Jo Jo. I'm sorry about your partners fall. There's straps (not the correct term but descriptive enough) that can help with foot drops. I think that your partner needs to move on from crutches to a walker. Four wheeled ones are more stable but it depends on what the OT orders.

    Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #30
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    Thanks Lynne I will ask them on the 18th when they come.

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