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    #16
    Hi Jo Jo,

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

    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.

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      #17
      Thank you

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        #18
        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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          #19
          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, 20:36.

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            #20
            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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              #21
              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, 22:31.

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                #22
                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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                  #23
                  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.

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                    #24
                    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

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                      #25
                      Thankyou Kayleigh all the best to you xx

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                        #26
                        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.

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                          #27
                          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

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                            #28
                            Hi all, my partner has had his first fall today. Absolutely heartbreaking. He’s using crutches but he’s 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.

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                              #29
                              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.

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

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