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    back after all this time!

    It must be more than three months since I last posted!

    As a result of losing some of my MND Warrior badges I am now unable to walk, have a need to be hoisted into bed and my breathing has begun to be compromised. I have just come out of hospital having had a RIG fitted although I can still stand in my stand hoist and eat and swallow food normally if I am fed. My voice still works although the only bit of my arms that work comes from the ability to prop myself up on the stand hoist etc and I can just about drive my electric wheelchair using my right hand.

    This is being dictated to my glamorous assistant and lead carer because I've still not come to terms with eyegaze. I'm going to start working on
    his next week.

    I'll have a poke around the forum now to see what's been going on in my absence.

    I also need to update my signature when I can remember where it is.
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    1. Me too. Still not looked at how long I was absent for. Welcome back
    2. posted too much since coming back, so, now can't see how long it was!! Damn
    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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      #3

      Originally posted by nunhead_man View Post
      I also need to update my signature when I can remember where it is.
      User Settings/Edit Settings -> Account
      Scroll down to Edit Signature
      Don't forget to save your changes
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        nunhead_man - glad you returned, but sorry things have changed so much for you xx
        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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          #5
          Andy
          nice to have you back. Dont go away for so long.
          Xxx
          when i can think of something profound i will update this.

          Comment


            #6
            Welcome back Andy, sorry the challenges have been mounting up. Hope the eye gaze becomes a lot easier 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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              #7
              Hi Andy, we've not met yet!

              Regarding eye gaze I found it really hard to get used to, so my local communication dudes offered a head mouse to move a cursor around the screen and a button to select instead of using dwell. how is your head movement? it may be worth considering? the only downside is that I can't find a version of my setup to work on an ipad!

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                #8
                Originally posted by richcrocker View Post
                ... the only downside is that I can't find a version of my setup to work on an ipad!
                Rich, one of the forum members ( Lcfcno1fan ) was supplied with the Integramouse + to use with an iPad - short video showing the basics:


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

                Comment


                  #9
                  Originally posted by Ellie View Post
                  Rich, one of the forum members ( Lcfcno1fan ) was supplied with the Integramouse + to use with an iPad - short video showing the basics:

                  Happy to help if I can 👍👍👍
                  Foxes Never Quit 💙

                  Comment

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