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    Hello

    I have previously posted on the MND connect thread when we were waiting for the diagnosis, which we have now had. My husband was only confirmed as having MND a couple of days ago. We are waiting to be referred now to the specialist Neurologist, can anyone let us know what to expect will happen next? The neurologist we saw told us of riluzole and research trials but we were in such a state we just didn’t know what to ask. My husband is so upset I don’t know how best to console him, it’s truly heart breaking.
    Carer for my husband who was diagnosed with ALS on 15.12.21.
    Trying to think of only today and tomorrow
    Alison ♥

    #2
    Sorry that I cannot answer your questions but wanted to welcome you and your husband xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #3
      So sorry to hear about your husbands diagnosis. I remember almost five years ago when my husband was diagnosed it took us all about 6 months before we could discuss and accept it. It will get easier and you will be supported well with various professionals. I wish you and your husband strength at this initial stage and it will get easier to accept and manage in the near future x

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        #4
        Doggymama The aftermath of the diagnoses bombshell is truly horrendous and your husband's tears are entirely normal and understandable.

        Generally, the first visit to the MND Clinic you will both meet the Consultant and, depending on how your husband feels and how the clinic operates, he might be seen by a Physiotherapist, Occupational Therapist, Respiratory specialist (sometimes it's the Physiotherapist initially) or appointments might be made for these services.

        This is from the RVI website:
        "Our service is managed by a consultant neurologist specialising in MND. It includes a team of dedicated MND care coordinators (with backgrounds in nursing and occupational therapy) and a dedicated senior physiotherapist.

        Our staff work in close partnership with speech and language therapists, dieticians, physiotherapists, occupational therapists, psychologists.

        The identification and control of key symptoms is at the heart of our holistic approach to MND management. The MND specialist care coordinators help to synchronise care and specialist rehabilitation services for symptom management. They also help with equipment or carer support as necessary. They run support groups for patients, their families and carers to discuss aspects of the disease, its management and their concerns."


        Would your husband be open to having counselling, and you? xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Thanks Ellie, I think my husband would gladly accept counselling. We are taking one day at a time at the moment, seems the only thing to do. X
          Carer for my husband who was diagnosed with ALS on 15.12.21.
          Trying to think of only today and tomorrow
          Alison ♥

          Comment


            #6
            Welcome, you at the right place
            I was diagnosed in June
            It's all funny

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              #7
              I think neuro will put all stuff in place. I've had appts with physio,OT, SALT and MND clinic xx

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                #8
                Welcome Doggymama you are certainly in the right place for friendship, help, advice and support. Very glad to see you but sorry you're here. 👍😁😘🤗xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Originally posted by Doggymama View Post
                  I think my husband would gladly accept counselling.
                  Counselling was a game changer for me in coming to terms with my diagnosis and I would not have seen myself as the counselling 'type' 🙄

                  Hope it can be organised for him. 😘
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    So sorry Doggymama on both your news . Hopefully you have been allocated an mnd nurse? There is alot about to happen that will feel such a whirlind for you both.

                    for me they started me on riluzole and did lung function tests straight away. They like to see where we stand re blood tests re liver before starting riluzole. Then lung function is done every so often to see if breathing is affected.

                    We could bombard you with the list but maybe just take this time to let the awful news sink in a little. Xx
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      Thank you for your replies and support. It’s so hard, my husband is desperately upset. It’s very early days and hopefully as time goes on, acceptance will come. I just want to make everything okay for him and I can’t. Xx
                      Carer for my husband who was diagnosed with ALS on 15.12.21.
                      Trying to think of only today and tomorrow
                      Alison ♥

                      Comment


                        #12
                        Am i the only one still not really believing i've got MND? Must be my meds, lol
                        Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                          #13
                          The appointment with the MND specialist has come through for 10th January. His headaches seem worse and he is complaining of noises in his ear. Are these usual symptoms? Thank you for any advice, we are so new to this x
                          Carer for my husband who was diagnosed with ALS on 15.12.21.
                          Trying to think of only today and tomorrow
                          Alison ♥

                          Comment


                            #14
                            Originally posted by Doggymama View Post
                            His headaches seem worse and he is complaining of noises in his ear. Are these usual symptoms?
                            Headaches in ALS/MND is usually caused by CO2 build up in the blood, caused by poor respiratory function due to weakened muscles. These headaches are usually worse in the morning but would be expected to go, or to lessen, once the person is upright/sitting up for a while (it's easier to breathe when not lying down)

                            Does your husband have constant headaches? Is he breathless?

                            The tinnutis may, or may not, be related to MND, or the headaches are not related to MND, and in fact the headaches and tinnitus are inter-related.

                            A blood test would quickly rule in or out CO2 retention - is there any hope he could get such a test, notwithstanding that tomorrow is Christmas Eve... xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Thanks Ellie, yesterday he got no relief from the headache, he was always quite breathless before as he has some heart damage from two previous heart attacks. He has been having daily morning headaches until yesterday where it was constant. Will see how he is when he wakes and try for an appointment xx
                              Carer for my husband who was diagnosed with ALS on 15.12.21.
                              Trying to think of only today and tomorrow
                              Alison ♥

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