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    My greatest fear

    Falling over and getting knocked out. Waking up in Hospital with no way of communicating. Just saying. πŸ₯πŸ™„πŸ˜πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Originally posted by matthew55 View Post
    Falling over and getting knocked out. Waking up in Hospital with no way of communicating. Just saying. πŸ₯πŸ™„πŸ˜πŸ€—xx
    Maybe wear a wrist band with info? X
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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      #3
      Where do I find that?
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Originally posted by matthew55 View Post
        no way of communicating. Just saying.
        Love what you did there.
        Seriously though, I got my wristband from the MND Association.
        Mostly to warn about oxygen, but it does say "ALERT! I have MND"
        WIN_20220218_15_28_58_Pro.jpg
        Hi, I'm Eddie.
        Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
        Still walking and talking, and wondering what the future will bring.

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          #5
          I’m a perfectionist and highly independent. Any situation where I’m not in control of my destiny is a real problem. I really am the worst type of person to get MND. So frustrating!

          Falling over and ending up helpless in hospital would be a nightmare for me too.
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

          Comment


            #6
            I have that wristband but what about on a ward?
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              Hi matthew55 . I have an alert bracelet and a hard copy of my medical notes and requests ( its a brief version! ) in my phone case. I guess it could be anywhere on you or near you . I get why you feel vulnerable, though . Hugs to you xxπŸ˜˜πŸ€—

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                #8
                matthew55

                I worry about how vunerable Thomas is. I fell outside just popping out to the car (slipped on grass and only stunned)

                but if Thomas is reclined with his feet up. He has no way to call for help.
                As no use of hands and he needs to press the buzzer with his foot first before calling via voice control. (Possum system)

                Maybe we need Alexa or Google Home.

                I have a Carer Card ( need to check purse and phone again to make sure) so if something happens to me, they know someone is vunerable at home.

                I also have ICE programmed into my phone
                ICE In Case of Emergency and it phones my mum

                So if you are found ambulance staff phones the ICE number
                I am ICE for my mum and dad and they have phoned my when dad fell in the street.

                Medical Alert Bracelets have a piece of paper in them with more details on them.

                Just brain storming

                I worry about Thomas in the hospital and mum has said she is never going back if she can help it.
                Donna

                Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                Comment


                  #9
                  https://www.surreycc.gov.uk/communit...-bottle-scheme

                  This is Surrey however I think lots of areas use this scheme matthew55 πŸ‘€πŸ‘πŸ»
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                  Comment


                    #10
                    Gosh LindaB you're a mine of information πŸ‘πŸ‘

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

                    ​

                    Comment


                      #11
                      matthew55 Yes, Wigan have that Message in a Bottle scheme too.

                      "Personal emergencies
                      If you have a sudden illness or accident you can be prepared by using the Message in a Bottle scheme. You can keep your medical and contact details in a special container in the fridge so that emergency services know where to find them."

                      But I get what you mean about on a ward - the lack of any means of communication leaves us totally vulnerable, it's my greatest fear too.

                      You're relying on transfer of pertinent information from the Emergency Services to A&E, and from A&E to the ward, not to mention shift handovers.

                      We just have to hope that staff cop on and bring alphabet boards/communication sheets when first faced with an ALSer unable to speak. Once they know, those sheets can be left with you.

                      The PALS department is only useful if you can ask for them in the first place... 😏

                      πŸ€—πŸ€—πŸ˜˜πŸ˜˜
                      ​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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