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    Hi my partner has just been diagnosed and we don’t know anything about what’s going to happen. We are both so scared

    #2
    Hi Jo Jo. I'm very sorry about your partners recent diagnosis. It must be a huge shock for you both.

    You have found a great place for sharing tips, for the giving and receiving of support and a non judgemental space to say whatever you want.

    If you have specific questions ask away. Somebody or other is likely to offer a helpful response.

    Nobody's MND journey is the same. But some things that most of us have experience of.

    I hope that your partner has a Neurologist to see regularly, will soon have an as Occupational Therapist, a Speech Therapist and Physio.

    You could also ring the MNDA Helpline. They could offer advice, information and sign posting to other services. In the mean time there's lots of information on the MND pages.

    It's a good idea for your partner to start on voice banking whilst she/he has a strong voice. Please search messages about this. There's lots of discussion and names of relevant software.

    Take care, Lynne
    Last edited by Lynne K; 14 October 2019, 09:51.
    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.

    Comment


      #3
      Hello Jo Jo and welcome.

      Sorry to hear that your partner has been diagnosed and of course you must be both worried about the future. You will find support and advice from our family forum members so don’t be afraid to ask for help,

      If you have a key subject of interest then type a word into the search the forum box and you will find past discussions on the issue.

      Best wishes ,
      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Hi JoJo

        Welcome to the forum. I'm sorry to hear about your partner and the diagnosis with mnd. I'd encourage you to ask any questions about your experiences so far. Also there is a forum for carers where you can post your questions or just blow off some steam. Best of luck with the future.

        Mick.

        Comment


          #5
          Hello JoJo and welcome.

          I'm sorry about your partner's diagnosis.

          Understandably, you have both got a lot to come to terms with but you have come to the right place for friendly support and advice.

          I'm not surprised you are both feeling scared. I felt that way when I was diagnosed and I also felt quite isolated. I found it helped to talk things through with my local MNDA Adviser who was able to let me know about the ongoing support available for me and my family, not only from the MNDA but also from local healthcare professionals.

          If you would like someone talk to, I recommend giving the MNDA helpline a call. The helpline Advisers are very friendly and have an understanding of what we are going through and, if you wish, will also ask your local Adviser to contact you.

          Sometimes it takes a little while from being diagnosed to recieving our first appointments with healthcare professionals (such as MND Nurse, OT, speech & language therapist etc) but hopefully your partner will start getting help and support from them very soon.

          Please feel welcome to ask questions as often as you would like to.

          Best wishes to you and your partner,

          Kayleigh

          Comment


            #6
            Hi JoJo and welcome to the Forum.

            Sorry about your partner's diagnosis.

            As time goes on, please feel free to ask or answer any questions, or just to share any worries or fears you may have.

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

            Comment


              #7
              What is voice banking

              Comment


                #8
                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
                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.

                Comment


                  #9
                  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
                  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.

                  Comment


                    #10
                    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

                    Comment


                      #11
                      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

                      Comment


                        #12
                        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 Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          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, 20:26.

                          Comment


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

                            Comment


                              #15
                              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 Spinal (hand) Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                              Comment

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