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Mindset - can it help?

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    #31
    I find life goes on no matter what happens to us as individuals. The trick is to face it with a smile. 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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      #32
      Too true Mathew 😊 πŸ˜€ πŸ€—, Lynne x
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

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        #33
        I have been threatened by the MNDA yet again. Mindset is important but us sufferers often face the sternest challenges from our loved ones and charities set up to protect us. I will be following this up with the Police and the media if necessary.
        Copyright Graham

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          #34
          Originally posted by Graham View Post
          I have been threatened by the MNDA yet again. Mindset is important but us sufferers often face the sternest challenges from our loved ones and charities set up to protect us. I will be following this up with the Police and the media if necessary.
          Morning Graham,

          We have not and will not be threatening you, all we ask is that you follow our Forum Guidelines, which you agreed to when you became a member of the Forum. As explained in our messages, your recent comments have been upsetting other members so we have removed these and will continue to do so for any future comments which upset other members.

          Many thanks,

          Forum Admin
          Our working hours are Monday to Friday 8:30am until 5pm

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            #35
            Originally posted by EvelynMW View Post
            Noone has told me that i have a specific diagnosis, but i'd guess the 3 -5 year, ALS as i have a known wonky gene.
            Hopefully not, Evelyn - after ~3 years your symptoms are still confined to just one area, and long may that continue! xx
            ​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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              #36
              A very thoughtful post. I know I can’t beat this disease, but I’m pretty sure I can use my best endeavours to plan and prepare, and do everything I can to try to keep one step ahead and to enjoy what remains to the full. I know I’m going to have some very bad days and dark thoughts. I also know that positivity may have only a marginal effect on the outcome, but I want to try to do my best for me, for my grown up children and my precious young grandchildren. I also want to try to spare my wife the worst of experiences and poor behaviour on my part if I can avoid it. I’d like them all to remember the good times, and also that I tried hard. It’s easy to say all this now, but it’s what I really want to transpire.
              Last edited by PeterPan; 14 July 2021, 18:18.
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                #37
                PeterPan thats the attitude I aspire toπŸ‘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. Generally weak. Mostly terrified.​​​​​​

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                  #38
                  I can only say that, having experienced only tiny changes in the same bodily parts over the last year, i know how fortunate i am, and how lucky i am to have such a positive atttude, as Ellie says - long may it continue!
                  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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                    #39
                    At the end of the day we are only human 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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                      #40
                      Originally posted by matthew55 View Post
                      At the end of the day we are only human
                      It helps to be Super Human if living with an MND πŸ¦Έβ€β™‚οΈπŸ¦Έβ€β™€οΈ 🀩

                      ​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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                        #41
                        I'm far too modest to admit that 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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                          #42
                          Originally posted by matthew55 View Post
                          I'm far too modest to admit that
                          🀣🀣🀣🀣🀣 Oh you're hilarious, you haven't a modest cell in your body. I used the male super hero emoji too, especially for you 😘😘

                          ​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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                            #43
                            Rachel (MNDA),

                            There are now 2 issues.

                            The hate post on the 'Call de Kops' thread which was humour between me and my carers! And the MNDA's subsequent conversation that disregarded the hate post.

                            The untimely passing of yet ANOTHER friend. Does the MNDA ever read posts that are clear cries for help?
                            Copyright Graham

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                              #44
                              Sad to say Graham you are dealing with paid employees and not mental health professionals. I have had similar problems here in the past. It's really not worth the blood you'll loose banging your head against the wall my friend. 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


                                #45
                                Originally posted by Graham View Post
                                Rachel (MNDA),

                                There are now 2 issues.

                                The hate post on the 'Call de Kops' thread which was humour between me and my carers! And the MNDA's subsequent conversation that disregarded the hate post.

                                The untimely passing of yet ANOTHER friend. Does the MNDA ever read posts that are clear cries for help?
                                Morning Graham,

                                Just to confirm this isn't Rachel, she works in our MND Connect team and isn't an Admin.

                                We are here to support you and we were also extremely sad to read about Barry. Unfortunately, as we have mentioned before, your recent comments have upset other members and gone against our guidelines.

                                In our latest messages we have encouraged you to contact our Connect team for support and we will continue to do this.

                                If you would like to discuss this anymore please message us as we would like to let this thread go back to its original purpose for all members.

                                Many thanks,

                                Forum Admin
                                Our working hours are Monday to Friday 8:30am until 5pm

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