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    #31
    Ditto 😍😍
    ​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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      #32
      πŸ€” Hey, just reading the side effects of Dantrolene Sodium - it could be responsible for your dark days. I am *not* suggesting you stop taking it, maybe just don't be so hard on yourself, knowing it is not you being 'mad & bad', rather it's the Dantrolene making you feel that way?

      Hugs and smoochies 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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        #33
        Any excuse will do 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

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          #34
          You have yet to remove the posts Matt.

          It is not just you suffering this disease Matt. Some of us have been suffering a great while longer without blowing up and trying to take everyone down into depression. No, I am not going to start on 'happy pills'.
          Copyright Graham

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            #35
            What's got your goat this morning mate? What posts?
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #36
              I should also point out that I take "happy pills" to stop my choking episodes more than anything else.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #37
                Good morning.

                Let’s hope all forum members have a good day.

                We had a lovely day yesterday at a local venue watching world war 2 re enactment day.Lots of exhibits, 1940s music, old houses done out in 1940s style.The sun shone and the group of re enactment people wore military or 1940s clothes.

                Today we are heading for a local craft fayre ..I love getting out as it’s a good distraction from MND .
                Before that its watch Catholic mass on line and covid boosters jabs.

                Sunday afternoon nap or reading session comes later.

                Simple things bring me much pleasure ..Just love looking at the outdoors , birds, flowers and people watching.

                So grateful my husband is so thoughtful and caring.Also feel lucky as my sister in law helps us several days a week to maintain our home and garden and her cooking is amazing.( my appetite is poor but love giving friends a slice of her amazing cakes and seeing their pleasure).

                We try to enjoy each day although at times it’s hard.Still making memories .

                Best wishes to you all
                Mary x

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                  #38
                  Amen sister πŸ™
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #39
                    Originally posted by matthew55 View Post
                    I should also point out that I take "happy pills" to stop my choking episodes more than anything else.
                    Mate, you do not have to justify your medications to anybody ... 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


                      #40
                      Mary C sounds a lovely weekend ...it's the simple things in life as you rightly say. 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.​​​​​​

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                        #41
                        People watching: one of my favourite pastimes 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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                          #42
                          You apologised but now don't know what for?
                          Last edited by Graham; 18 October 2021, 23:55.
                          Copyright Graham

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                            #43
                            Three things: A general apology, the clue is in the words; my memory is fading; you and what army? 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

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                              #44
                              "That's now my friend. It's the nose next for you.", was your comment that you have not removed and the MNDA moderator saw fit to leave up while my post about MNDA corruption was removed. This was the worst of your slew of unkind comments on me. The police investigation is ongoing.
                              Copyright Graham

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                                #45
                                I have no clue what you're talking about about. Please stop threatening me.
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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