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Mum diagnosed and died 7 days later

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    Mum diagnosed and died 7 days later

    My mum was diagnosed with MND after 2 days in hospital and died 7 days later. As you can imagine we are totally heartbroken and devastated. Is this normal? I am struggling to come to terms with how quick it was and mum is no longer here.
    In 8-10weeks. My super fit mum who did 20,000 steps a day, cycled, swam and played golf, a very activity lady. Started to lose mobility would struggle up the stairs, and steps to needing a walker around the house, to not being able to move herself without dads help. To then struggling to breathe and swallow, losing weight very quickly. Each week she got worse. To then go to hospital where diagnosed by an neurologist after having an ENG then passed away 7 days later.
    Hence from Middle May 2021 symptoms started to show to dying on 30th July 2021. (During this time had loads of tests, scan, ct, mri, bloods, all tests came back clear. She was under rheumatology to be transferred to Neurology 12th July. However the NHS neurologist didn't see her until she was in hospital.)

    Please any help and advice to get me through this would greatly be received.
    Last edited by Hhawkins; 5 October 2021, 11:34.

    I’m so sorry for your mum’s rapid decline. It must be really difficult for you. If you can try to organise some counselling for yourself. That ought to help. Take care, Lynne x
    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.


      Loosing your mum is one of the hardest things to deal with. My heart goes out to you. x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Sorry for your loss Hhawkins. It is very rapid but this disease is very variable in its progression. It's cruel and devastating xx


          Hhawkins i am really sorry to read about your mum. This horrible disease can be brutally fast or indeed horribly slow. There is no set pattern. To lose your mum so quickly is heartbreaking. My thoughts are with you and your family.

          May I explain something about the tests? There is no test that actually diagnoses MND. The numerous tests that your mum had and others with MND like me are to eliminate any other illness that can cause similar symptoms. The results when they come back usually say ‘Unremarkable’, that is nothing has been found to mimic the symptoms and therefore we cannot remark/comment on them.

          You are so new to this forum and therefore do not know some of our comments. One is to offer Hugs to someone, which as you know when it’s physical it is comforting. Here we cannot be physical so can only offer virtual hugs. I am sending you and your family a very big hug during this heart breaking time.

          Stay strong and do seek some form of counseling. Shouting, screaming and crying is very common here. We have all done and do it, you are not alone.



            So sorry for your loss Hhawkins

            I hope you were kept informed of your mum's condition during that traumatic week and that she was comfortable during her last few days.

            Condolences to you.

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


              So sorry to hear about rapid decline and death of your mom.Heartbreaking for you and your family.
              I have not encountered such a rapid decline and you must all be in shock.

              As Richard and Lynne said Bereavement counselling might help you by giving the opportunity to talk your emotions through.
              There might be support from the local MND Association ?
              Talking feelings through is so hard but might help.

              Sincere condolence



                Hi Hhawkins so sorry for your loss 💕💕 My Dad died a month ago after been diagnosed in June. We knew something was wrong with him before this. My Dad saw his MND nurse on the Wed. I was with him most of the day on the Thurs. On the Friday morning he phoned me and couldn't breath. My Dad died 4 days later. The MND nurse was very shocked as he was fine (as much as he could be) on the Wed. My Dad also lost weight very rapidly. I'm here if you need to chat. You can always DM me xx


                • So sorry for you losing your mum.

                  Unfortunately it can be as short as 6 months. xxxx


                    Thank you for all your messages.


                      So very sorry for your loss, it is hard to comprehend, but this forum is here always should you need us.