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    History teaches us

    30 years ago I was with a woman who had MS. In those days little was known about MS and some even thought it was a mental condition. Fast forward to today and MS is referenced in movies and TV. Maybe in another thirty years the same will happen for MND? We can only hope. πŸ˜πŸ€”πŸ€—β€οΈxx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    there is a film about a woman with mnd. i cant recall what it is called but it was on prime. she was planning to kill herself. i couldnt watch it especially with stephen near me. i didnt enjoy it at all i turned it off.
    when i can think of something profound i will update this.

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      #3
      Well that is what I'm planning too. 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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        #4
        Oh Matthew. Actually wouldn't it be better if we could do that? Just flick a switch. Thing is I'm a bit clumsy and my luck I'd do it by mistake. I had a nose stud and the amount of times I nearly removed my nose. I'm just a disaster on legs. Though yesterday managed to fall over putting my jeans on. 🀭
        when i can think of something profound i will update this.

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          #5
          Blackbird....Susan Sarandon - Kate Winslet- Sam Neill
          denise
          Forum Member
          denise ?
          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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            #6
            That's it Linda. I didn't like it. I'm not sure why xx
            when i can think of something profound i will update this.

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              #7
              I liked it however it's a difficult watch in many ways.
              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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                #8
                Not sure I could watch. I'm half way between wanting to know more of what lies in my future and half burying my head in the sand. Want to know, but daren't look.

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                  #9
                  Susie
                  Forum Member
                  Susie the character in the film is really still 'well' however decides to end her life before she deteriorates further. It's how various family members come to terms with her decision. A good movie IMO however the subject matter could be upsetting for some.
                  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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                    #10
                    Susie
                    Forum Member
                    Susie
                    We can’t know what lies ahead as the pattern is unpredictable and different for us all.Of course we know if it’s bulbar onset how MND might affect speech etc.
                    Sometimes I read peoples experiences on this forum and can’t help thinking that I hope I don’t get certain symptoms.
                    I find I prefer to take it as it comes now within reason.Having always been fairly organised I am glad I planned things like sorting a lift, wet room ahead of actually needed them.
                    I don’t read any more about MND only when I feel it’s helpful to me or others.I went through a phase of going on you tube and looking at end of life stories .

                    For me as symptoms crop up I turn to palliative care team for advise or on this forum as nearly always somebody has had similar issues and will say what helped them.
                    I also find my faith helps.That said I have had periods when my mind wanders to what I will need to go through on this journey.

                    I totally understand when you say Susie you alternate between burying head in the sand and wanting to learn more about MND .

                    Hope you have a good day
                    Best wishes
                    Mary


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                      #11
                      It is what it is and what will be will be. One day at a time. βŒšπŸ€—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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                        #12
                        You're quite right, but we seem to always be 'running' to catch up. Wet room happened just in time although I couldn't get a shower for 3 weeks before it was done. The small extension to the downstairs won't start until after the New Year break so we've got the bed crammed into the lounge making it difficult with the stand assist and sling.
                        Last week I could transfer from the wheelchair to the raise tilt chair and the toilet. This week I often get stuck and Mark needs to lift me by the handling belt.
                        Tomorrow he has to go to fetch the car and will be away from 10.15 to 4.45. Very scary as he needs to help me with most things. Hope I can keep my legs crossed πŸ˜‚. Carers are not in place yet.
                        A month ago I was so much more independent.
                        I think having no one else here with MND, no hospice or respite and most of my care team are learning about MND with me. I'm their experience. I do have a specialist MND nurse coordinator and MND consultant neurologist on the mainland but they seem such a long way away.
                        I'm not complaining, I get so much support from my OT and she's great, but do worry that we're going to get caught out and not cope . Perhaps they have plans, I hope so 😁
                        Good night hugs to all πŸ€—πŸ€—πŸ€—

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                          #13
                          Don't despair. I find lows are followed by highs and as we are left with our brains, think outside the box and adapt. I have found my practically useless right hand is better at moving the dial on my pump than my left. Stay Strong and Stay Sane. πŸ’ͺ😘😁❀️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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                            #14
                            Susie
                            Forum Member
                            Susie is there anyone on the island who you could pay as part of a contingency plan...to be a carer in emergencies?
                            When we assess carers we always agree a contingency plan....so maybe something to consider with your MND team for the future.
                            Hope today goes well but also would be a good idea to have someone you can call on or even someone just to be with you for those hours?
                            Take care 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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                              #15
                              Originally posted by Susie View Post
                              I think having no one else here with MND, no hospice or respite and most of my care team are learning about MND with me. I'm their experience.
                              Sue, that's not always a bad thing. I've found the 'non-experts' can think outside of the box, rather than having preconceived and fixed opinions. 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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