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    All confused

    So my mum was diagnosed in March this year and the disease has processed beyond quickly (in my eyes). I live in Hertfordshire and mum & dad In Norfolk. Trying to get them in a care home near us as mum now needs 24hr care and dad has altzimers and dementia. That’s hard In itself!!!!!!
    so this morning mum has been taken into hospital as hasn’t eaten in six days and BARLEY drank too. I came up from Herts yesterday and the decline In two weeks was SHOCKING. Is this normal???? Mums struggling to talk and swallow and has been bed bound for a while now. From her belly button down it’s all not working and now her arms are so much weaker. She looked so poorly this morning I’m so scared but just don’t know what to expect???? Xx

    #2
    My Dad was diagnosed in June this year and sadly died yesterday. My Dad's MND progressed very quickly. He had dramatic weight loss of the period of a short time. My poor Dad phoned me on Friday morning and couldn't breath. The MND had weakening his breathing muscles so quickly. He was only seen by the MND nurse two days before.
    Sending love and hugs to you 💕💕 Message me any time xx

    Comment


      #3
      A warm welcome to the forum Laney, sorry to hear about your mum, and your dad.

      Originally posted by Laney74 View Post
      so this morning mum has been taken into hospital as hasn’t eaten in six days and BARLEY drank too.
      May I ask who organised for your mum to go into hospital? And do you know if she is now on a drip and/or has an NG tube?

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

      Comment


        #4
        Welcome Laney74. It's difficult to know progression. It's different for everyone, but the more you can detail about your mum's condition the better x



        Comment


          #5
          Hi daught21.so sorry to hear about your Dad. I hope you are coping as well as you can. Sending a big hug.x

          Comment


            #6
            Laney74 thinking of you and your Mum and Dad.xx

            Comment


              #7
              Laney74 hoping your mum is getting good care in hospital. Such a lot happening at once must feel overwhelming. Take care xx
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                #8
                It is very difficult to read stories like this and not wonder what the heck is happening in this country????

                Social services Laney but surely your parents are in the system???
                Copyright Graham

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                  #9
                  Hi all. Thank you for the replies!! The respiratory dr called me yesterday and told me mum has such high levels of carbon dioxide in her bloods she wasn’t likely to come out of hospital. Haven’t slept all night kept waiting for the phone to ring!!!!!!!
                  I had to call 999 yesterday morning after mum was struggling to breathe and hadn’t eaten or drunk for a few days. They was going to do NIV last night.
                  waiting to hear more news this Am. xxx

                  Comment


                    #10
                    Originally posted by Daught21 View Post
                    My Dad was diagnosed in June this year and sadly died yesterday. My Dad's MND progressed very quickly. He had dramatic weight loss of the period of a short time. My poor Dad phoned me on Friday morning and couldn't breath. The MND had weakening his breathing muscles so quickly. He was only seen by the MND nurse two days before.
                    Sending love and hugs to you 💕💕 Message me any time xx

                    I’m so so sorry to hear about you dad 😢😢.
                    sending hugs back to you 💔💔.
                    mum was the same she was seen by OT respiratory nurse and two lots of paramedics at the weekend!!! Xx

                    Comment


                      #11
                      Hi Laney,
                      I hope your mom is comfortable now in hospital and you are kept informed.It’s so awful and stressful waiting for as you said the phone to ring.Are you able to go and be with your mom in hospital as she is so ill?
                      Thinking of you
                      Mary

                      Comment


                        #12
                        Originally posted by Daught21 View Post
                        My Dad was diagnosed in June this year and sadly died yesterday. My Dad's MND progressed very quickly. He had dramatic weight loss of the period of a short time. My poor Dad phoned me on Friday morning and couldn't breath. The MND had weakening his breathing muscles so quickly. He was only seen by the MND nurse two days before.
                        Sending love and hugs to you 💕💕 Message me any time xx
                        I’m very sorry for the loss of your dad so quickly to this cruel disease. RIP your dad and hugs and love for you. 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.

                        Comment


                          #13
                          Hi Laney. Not easy at all for you with two parents in such a bad situation. I hope that your mums NIV worked to get her carbon dioxide levels down. Good luck for a local care home close to you can accommodate both parents. Love 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.

                          Comment


                            #14
                            Originally posted by Daught21 View Post
                            My Dad was diagnosed in June this year and sadly died yesterday. My Dad's MND progressed very quickly. He had dramatic weight loss of the period of a short time. My poor Dad phoned me on Friday morning and couldn't breath. The MND had weakening his breathing muscles so quickly. He was only seen by the MND nurse two days before.
                            Sending love and hugs to you 💕💕 Message me any time xx
                            Daught21

                            So sorry to hear of your loss

                            Hugs and Strength
                            at this callenging time

                            Kindest wishes

                            Donna

                            Comment


                              #15
                              Hope everything is okay. Thinking of you 🤗🙏xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

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