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Mindset - can it help?

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    Mindset - can it help?

    Members of our elite group have lots of different feelings after diagnosis; some panic, some become depressed, some accept it and try to live as normal a life as possible, some refuse to accept....

    This made me wonder if our beliefs can affect disease progression. Many members have survived long beyond the pessimistic 3 - 5 years often spoken about. Are those of us who manage to carry on as best they can, more likely to survive longer?

    If we believe we can survive, believe the disease can be held back - do our beliefs influence the progression? I would be fascinated to learn the mindsets of members who were diagnosed over 5 years ago, and are still here.

    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

    Interesting thought Evelyn
    personally, I think you have it and it goes at its own pace regardless of how you behave, but being positive and keeping active, mentally it keeps it at bay.
    I will add I’m on slow boat to China with mine so it’s probably less stressful and easier to ignore at times
    (Still enjoying beer and golf, the latter just slower)
    As long as there’s golf and beer I’m happy


      I'm thinking depression and a bad state of mind will make our body and our minds heavy and slow. It must impact on our health and allow us to be receptive to other illnesses.

      Being upbeat and positive must help us cope better and lift the spirits of those around us. This in turn makes their responses happier and more responsive. A happy household must make our lives better and healthier.

      I'm not saying it's a cure but the environment we choose to live in we either give in to misery and go downhill or we make the most of each day.


        It's a no brainer as far as I'm concerned. Positive Mental Attitude improves. Depression kills. Simples. 🤔🤗😍😘xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


          I have mixed views. Yes people who have positive mental attitude may feel emotionally better however a disease is a disease. It will progress or not as these things do...anecdotally I've known people both glass half full and half empty given poor prognosis- Im not convinced their mindset made a difference about progression.
          I'm sure there's lots of research about mental state and terminal disease. Both sides of the debate.
          Also I'm mindful of giving the impression 'it's your fault' because your head space is too negative. Not that anyone says that here of course.
          ​​​​​​​It's also a pet hate of mine when people use warrior language to describe ppl living with terminal disease ... battling cancer....fighting mnd. As though there's choice...
          Interesting discussion.🤔
          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.​​​​​​


            Oh how I wish I had terminal Cancer 😁😄😍😘xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              My dad had multiple myeloma. Something else that was hard at the time to get a diagnosis. They gave him a wrong diagnosis, wrong treatment. Told him he might have 6 months to live. He pretty much gave up and died. I often feel if they hadn't told him how long he had he might have had lived longer. I might be wrong but he wasnt even told in a very pleasant way.


                My point is talking and eating until death 👍😁😍😘xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                  Maybe it doesn't make much difference to the length of time you have left, but it sure makes a difference to your homelife and people around you, and this will lead on to your own wellbeing. I have found people respond to a positive mental attitude, but would back away from someone who is deep in doom and gloom. Being a carer of someone who is completely negative would be very difficult, I would say. And when you have only one person looking after you, you want to make that time as easy as possible.


                    I agree with Aussie girl 😚


                      My response is in 2 parts:

                      First off, one needs to know what form of MND they have. The “ 3-5 years” prognosis is for classic ALS so, if you have any other form of MND, that timeframe likely does not apply, and thinking, even subconsciously, of an expiry date stamped on your forehead, can impact on your psyche.

                      People with PLS are expected to live for decades, PMA, flail arm, flail leg have better outlooks than those with classic ALS (limb or bulbar onset), which goes to show why knowing what you have is important. There is a man in Ireland who has a flail arm type of MND for nearly 45 years, it never progressed past his arms, rare but it can happen.

                      EvelynMW If, after 2-3 years, you still only have localised neuronal damage, which looks very positive compared to classic ALS which, after a similar time, would have caused substantially more damage.

                      Secondly, yes, of course a positive outlook is as important to cope with a challenging situation, be it a job interview or living with a terminal illness (not that they’re equally challenging in the grand scheme of things!!) *However*, we are not a homogenous people (thankfully, as that would be ultra-boring 😏) so some folk are happy to live with a “que sera, sera” attitude, others with a “this is not something I want to live with” sentiment and will check out on there terms, yet more will throw the kitchen sink at staying alive for as long as possible - no right way, no wrong way, no judgement.

                      I don’t think a positive outlook will slow progression, but what it will do is ensure you get the best possible chance because you will continue getting enough nutrition, hydration, helpful meds and appliances. Stress, inadequate calories, a bad fall, a hospital stay etc. can accelerate progression, even for a short period, but a good mindset and hard work can pull a person back up, when spiralling downwards is also an option.

                      Linked in with positivity is self-esteem which, to me at least, is crucial - having self-esteem allows for, and encourages, maintaining social and family relationships, encourages one to get out of bed every morning and to love and be loved. I acknowledge this is not universally accessible.

                      And, of course, apart from the diagnosis one has, luck is perhaps the most important factor in determining one’s outcome - family circumstances; housing; where you live; access to good quality carers, equipment and healthcare professionals; income.

                      Love Ellie.

                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                        This is such an emotive topic. I don't think anyone with MND can stay positive all the time because let's face it the future is scary. I don't like it when its said that anyone is " fighting " a terminal disease because I don't believe progression can be halted. We lost our daughter when she was five due to a very rare form of cancer and noone could have been more positive and full of life than she was. Like most children she was excited to live everyday as if it was her last.

                        However, an upbeat frame of mind helps us through the day as does a sense of humour and a good attitude to help ourselves. ( nutrition etc !) It certainly helps our carers and loved ones but as Ellie says this isn't available to everyone and there is no right or wrong way.

                        I appreciate that my progression is relatively slow ( famous last words !!) and I am very lucky to have support from family and close friends to keep me cheerful!

                        Love Debbie x


                          Deb how absolutely devastating to lose a child so sorry for your loss. xxx
                          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.​​​​​​


                            I posted on this not too many days ago at ALS News Today.

                            This link is to a study on happiness. It seems that being positive, happy, and optimistic, actually might slow down ALS progression. Certainly, it is better to live with a smile than cry in the dark!

                            “Good emotional well-being was associated with lower disease aggressiveness in the univariate analysis and also after adjustment for ALSFRS-R and known predictors of disease progression, namely disease duration and presence of bulbar symptoms”.
                            Last edited by Johnny5; 11 July 2021, 12:30.


                              I lost my angel thirty years ago but not a day passes that I don't think about her. My little Victoria. 😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx