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    Hi my name is Lynne. My husband was diagnosed with MND a week ago. In March he was ok to the extent he was completing cycling challenges. Today he struggles with balance, walking, speech. He can’t do anything he used to do and is considering now a wheelchair. To say I’m overwhelmed is an understatement- I just don’t understand how this has progressed so quickly. 😢

    #2
    Oh Lynne
    my heart goes out to you both. It's hard to take in even though my husband's diagnosis has been over 5 years. The only way to cope is one day at a time and focusing on what he can do.

    I hope you have a lot of support from mnd and social services. Keep a diary of everyone that visits, including telephone numbers. It can get a bit confusing.

    We are all here for you when ever you need us.

    Love and hugs
    Denise xxx
    when i can think of something profound i will update this.

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      #3
      Lynne, so very sorry to hear this, and such a lot of change in a few months and diagnosis to adjust to. Hope you have got a good lot of support around you, professional and informal. And we’re all here to offer support and experience wherever we can. Love to you and your husband x
      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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        #4
        Hi lynne sorry you are both starting this awful journey. The shock takes a while to settle. Once it does you can maybe work through what is needed first.

        I will recommend your partner banks his voice. You do it via the link. Then the mnd association fund it.

        "I Will Always Be Me – world’s first e-book that banks your voice is launched | MND Association" https://www.mndassociation.org/i-wil...e-is-launched/
        Diagnosed May 2021 bulbar onset als.

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          #5
          Lynne11013 it’s so daunting at first, take one day at a time and hopefully things calm down a bit. My husband is still walking albeit slowly after almost 5 years so try not to get overwhelmed (know it’s hard not to) things will settle and you begin to adapt in time.xx

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            #6
            Thanks everyone. I think it is just so sudden- no symptoms prior to March/April except for dizziness which doctor thought was his blood pressure. Was told at hospital last week that because it was progressing so rapidly he only had 6 - 12 months. I think that’s what I’m struggling with as I thought we would have longer.

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              #7
              Lynne11013 Lyn honestly no ones knows how long a person with any illness has to live. I felt the same as you at the beginning as they told me on the diagnosis day they were concerned about my husbands breathing. I thought exactly the same thinking he was going to die pretty soon but almost five years he,s still here a bit frailer but nothing that we can’t cope with. The NIV has been a god send with his breathing. I know no one can totally reassure you but try not to overwhelm yourself. You’ll have good days and bad ones hopefully the bad will be few with many good days xx

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                #8
                Lynne11013 sorry you are both facing such a tough time. This can often be a very unpredictable illness however...my walking and balance deteriorated rapidly from hiking in the mountains in the October to being unable to pretty much stand at all without holding on to walls etc by the following January. However, that was 10 years ago, still here and doing OK. You can often have an acceleration and then a significant slowdown. Its very hard, but if he is able to adapt around what he can do, things may level off a lot. X

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                  #9
                  Lynne11013 A warm welcome to the forum Lynne, awfully sorry about your husband's diagnosis and progression.

                  Has he had any respiratory testing yet? How is his breathing? Breathing is the biggest survival indicator.

                  Love Ellie 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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                    #10
                    Thank Ellie. His respiratory is borderline. The MND nurse came today and has been very good. She said that it is very difficult to say how long he has left and it could be longer - she mentioned about breathing.

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                      #11
                      So sorry Lynne. My husband was like yours, walking at Christmas, in a wheelchair by Easter, on overnight NIV two weeks after diagnosis. I too thought we'd lose him quickly however he's still here 4 years later.
                      There are some very knowledgeable people on this forum, the rest of us are well meaning.
                      Take care xxx

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                        #12
                        Thank you everyone for your kind words & support. MND nurse came yesterday & physio today. Feeling a bit more optimistic 🥰

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