Announcement

Collapse
No announcement yet.

Harsh reality

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    I can't imagine who Ellie is referring to, but one name is springing to mind if she is off the forum naughty step.

    It gets worse when you can't type quickly and you have to leave many thoughts in the brain, uncommunicated.
    Copyright Graham

    Comment


      #17
      Well thanks graham 🤤 I think when you start trying to communicate you've got to be short and sharp. Get their attention. Don't go for long sentences otherwise they get bored. Im a very fast typist but would find it difficult to keep up a conversation . Let's be honest no one has time anymore. I suppose lock down has slowed a lot of things down.
      the lady in the wheelchair just sat there. This was the hospital but she didn't do anything to get his attention. Think I would keep a handy walking stick to knock on the counter. How about a bicycle bell? 🤔

      Comment


        #18
        Originally posted by Lizzie View Post
        I feel as if I have lost a big part of my personality. I can see I’ll have to find new ways of asserting myself!
        Lizzie, I always say that I'd 'happily' live with my disabilities, but just give me my speech back!! To me, speech and language is the essence of being human (and I mean no disrespect to people who, for physical and developmental reasons, find speech and/or language challenging)

        It is possible to retain one's personality without physically speaking. It can be hard for sure, and I certainly would not have won so 'easily' without eye tracking, but people don't need to fade into the shadows if using low-tech communication aids.

        In fact, it can be an opportunity to redefine yourself, if you so wish 😁 If people's ability to speak starts to decrease, it helps if there is a corresponding increase in their determination...

        Good luck, Lizzie.

        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


          #19
          Originally posted by Ellie View Post
          Lizzie, I always say that I'd 'happily' live with my disabilities, but just give me my speech back!! To me, speech and language is the essence of being human.......
          I agree so much Ellie. I only said this to my wife the other day. Get rid of all the bulbar symptoms and the disease would be much easier to cope with.
          Each day is made easier with a bit of humour.

          Comment


            #20
            I totally agree 🥲 even my best mate struggled to understand me today 🥺 janette x
            Janette x

            Comment

            Working...
            X