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Mindset - can it help?

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    #16
    Originally posted by matthew55 View Post
    I lost my angel thirty years ago but not a day passes that I don't think about her. My little Victoria. 😍xx
    Pain of losing a child must be unbearable - so sorry to hear that MatthewπŸ™
    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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      #17
      The pain fades but the love never dies πŸŒˆπŸΌπŸ™β­πŸŽ—οΈ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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        #18
        At well over 9 years, with classic als, I'd agree with all the points. Personally I struggled to handle the diagnosis for 6 months then decided to book a holiday and try to live a 'normal' life and not dwell on what might be. We had a famiily tragedy shortly after, so I had to support others. Clearly I am both lucky in terms of progression, but have tried to be positive too. My consultant said in her many years of working with mnd, those who were more positive did better...I guess in a degenerative condition, this can make sense.

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          #19
          There's also a very upbeat lady in US, Dagmar Munn, who has a blog about mindfulness and positivity. She was diagnosed with als eleven years ago.

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            #20
            Olivia H also depends as you say on where you're 'at' time wise....for me early days so all the usual grief process to get through before I even know how I am -if that makes sense. For others- years in - the place they are mentally may be very different.
            matthew55 life can never be the same with such loss...yes the love lives on.πŸ’ž
            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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              #21
              So difficult to stay positive when every day you are reminded that you cannot do some of the simplest things in life.
              As a family we joke about it, it's a military way of dealing with dire situations, we seek the funny side of my condition.
              What do you say to anyone when they greet you with "how are you?", which is an often used greeting statement?
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

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                #22
                Originally posted by Beemer View Post
                What do you say to anyone when they greet you with "how are you?"
                My stock reply is... "still dying" πŸ˜…πŸ˜… (I kid you not) 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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                  #23
                  Originally posted by Ellie View Post
                  My stock reply is... "still dying" πŸ˜…πŸ˜… (I kid you not) xx
                  love it
                  Diagnosed 2nd Jan 2020
                  Both arms/shoulders affected, left worse than right.
                  Progressive Muscular Atrophy suspected

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                    #24
                    Originally posted by Olivia H View Post
                    There's also a very upbeat lady in US, Dagmar Munn, who has a blog about mindfulness and positivity. She was diagnosed with als eleven years ago.
                    Dagmar's newsletter is at the ALS News Today.

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                      #25
                      Originally posted by Ellie View Post
                      My stock reply is... "still dying" πŸ˜…πŸ˜… (I kid you not) xx
                      Thats going to be my new reply. πŸ˜…( sorry for being a copycat 🐈 😻!) So much better than saying oh im fine thank you ! Xx

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                        #26
                        Have I introduced you to my "happy" cushion? A friend knitted it for me and said it would make me smile and therefore feel happy! Not sure if it would work if feeling depressed, but it gives me warm feeling that she cared enough to make me one.x
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                        Diagnosed July 2020, ALS bulbar onset.

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                          #27
                          overdid the photoswith me struggling to understand this technology!
                          Diagnosed July 2020, ALS bulbar onset.

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                            #28
                            Ah to have a friend who knits. But seriously anything that works is a good thing in my book. 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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                              #29
                              Originally posted by Heather R View Post
                              Have I introduced you to my "happy" cushion?
                              Oh, that's lovely, Heather, what a kind friend! Thanks for posting the photo. 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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                                #30
                                Thank you all for replying. 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. I also accept that one feelings will chaange at different stages of the disease. If there really are studies that say positive mindset helps, i wouldn't be surprised. I consider myself very fortunate thus far, but have had a few moments wondering if i would still feel this chipper if there was a lot more progression. As it is, i have not felt surprised, shocked, upset or anything negative so far, and am grateful that i have not succumbed to any.

                                Reading about other conditions has made me wonder about my specific version of the disease, but, as long as i stay his whole, it really does not matter.

                                So sorry to read about the terrible losses some of you have suffered. Deciding to stay positive after those appalling results is a choice that not everyone can make.
                                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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