Promoting MND/ASL

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  • matthew55
    Forum Member
    • May 2020
    • 5794

    Promoting MND/ASL

    I was always taught that if you don't ask you don't get. So how about putting Ellie and me up for a New Years Honour? Services to MND/ASL livers and carers. Okay we don't have olympic medals, play tennis or own a bank. What we do is help, advise, support and love people who are in a desperate situation not of their own making. Oh and it's number three on my Bucket list! 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
  • DeeH
    Forum Member
    • Jul 2020
    • 340

    #2
    matthew55 that's a great idea for you and @Ellie

    You both deserve it.

    Mum got a MBE in 2015 for services for people with dementia, as someone with dementia. Went to Buckingham palace and got it from Prince Charles. I think you need someone in authority to nominate you, as a respectable person. (mmmmmm)

    We will need to investigate further, someone got it for services to Textiles. So it is possible

    As you say, get MND more visible.

    Hugs
    Donna

    What's number one and two on the bucket list??? Curious people want to know
    Donna

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

    Comment

    • matthew55
      Forum Member
      • May 2020
      • 5794

      #3
      No1 Sleep with Sandra Bullock, No 2 Walk on the Great Wall 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

      Comment

      • shelly21
        Forum Member
        • May 2021
        • 1060

        #4
        matthew55 haha you share the same taste in women as my other half. Loves Sandra.

        you pair do certainly help. Keep up the good works chap's
        Diagnosed May 2021 bulbar onset als.

        Comment

        • Ellie
          Forum Member
          • Oct 2012
          • 12428

          #5
          Hmmmm, I checked the date and it's not the 1st of April 😏

          Originally posted by matthew55 View Post
          So how about putting Ellie and me up for a New Years Honour?
          Frankly, for me, I couldn't think of anything I'd run away from faster than to be publicly thanked for doing nothing but enjoying myself 😟😳

          But if you want to go for an honour, I'd back you all the way πŸ‘πŸ‘πŸ‘πŸ˜˜
          ​Diagnosed 2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
          .
          ​

          Comment

          • matthew55
            Forum Member
            • May 2020
            • 5794

            #6
            You're too modest girl. βœŒοΈπŸ˜πŸ€—πŸ˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment

            • denise
              Forum Member
              • Jun 2020
              • 6688

              #7
              Think you all deserve a medal.

              πŸ₯°πŸ€—πŸ˜˜
              when i can think of something profound i will update this.

              Comment

              • Ellie
                Forum Member
                • Oct 2012
                • 12428

                #8
                Originally posted by denise View Post
                Think you all deserve a medal.
                Include yourself and all caring family members on the medal list Denise hun πŸ€—πŸ€—πŸ€—πŸ˜˜

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

                Comment

                • EvelynMW
                  Forum Member
                  • Apr 2021
                  • 279

                  #9
                  So Matthew55 and Ellie are highly thought of, no surprise here.
                  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.

                  Comment

                  • denise
                    Forum Member
                    • Jun 2020
                    • 6688

                    #10
                    Thanks ellie. πŸ₯°πŸ˜˜πŸ€—
                    when i can think of something profound i will update this.

                    Comment

                    • DeeH
                      Forum Member
                      • Jul 2020
                      • 340

                      #11
                      matthew55

                      Good choices

                      Mine involve a lie in past 8am.

                      When I fell in love with Thomas, he failed to mention he is up with the larks.

                      We got to walk the Machu Pichu Trail in the early days of romance and always planned on the West Highland Way (which I did with my mum, 30 years ago)

                      Hope you get your pillow to your liking for tonight

                      Cheers

                      Donna
                      Donna

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

                      Comment

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