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    #31
    Thanks Matthew you are absolutely right we are all in the same boat.

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      #32
      Hi Dennis,

      Its great you're working and feeling motivated.

      I'm really going to try meditation. I like the idea of visualising paddling in a warm sea with my family. If it doesn't work it was a good excuse to order expensive, scented candles today. I think I might have to give the floor cushion a miss though or I'd never get up ! 🀣 My riser recliner is comfortable and I'm going to play soothing music and zone out.

      Thanks for the suggestion,
      Love Debbie x

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        #33
        Hi Debbie,

        I am really pleased for you. We all are in a boat in a sea of despair, and we all to some degree need escapism. To be honest with you the time that I meditate is a time that I don't think about this awful disease. I love it, you have hit the nail on the head nothing ventured nothing gained.

        Dennis. X

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          #34
          7.8 Billion people currently inhabit the planet. Each and every one with their own personal problems. We all have crosses to bear! If you are reading this post then you more than likely also have the luxury of running water that you can drink, a toilet, refrigerator, electricity and even a device that is connected to the internet. Already you are more fortunate than half the world's population. In less than 130 years every single person alive today WILL BE DEAD and it is estimated that then the world population will be 28 billion people. All of which will have their own problems and challenges, love and losses.

          7

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            #35
            Sorry my name isn't Ellie and can you please wind your neck in respectfully yours
            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
              matthew55 I take it that what I have said has struck a chord with you and you are not alone. I have as much as a right as you do to express my feelings, emotions and opinions. We often hate what we see in others that we hate about ourselves.

              If it's my opinion and choose a path in life then I have the right to state it without casting accusation of people that have made the opposite decision. We are not the first or the last to have MND and this forum is a historical collection of transcripts from any person with or a carer of person with MND. Some day, past, present or future someone will read this and either it will hold some relevance or not but certainly not directed at one individual unless I use the @ before their name.

              I love you all and we are on the same boat. Don't take offense and be strong.

              Love Dennis.

              9

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                #37
                This time last year, I woke up early grabbed my bag, jumped on my Kawasaki ZZR motorcycle and raced to Luton airport. I was off to Budapest for some sightseeing and swimming in the amazing thermal baths. Each day I walked all day to cover the Buda and pest sides. I estimate that I walked 30km per day. I even got to stop of at the famous Celeritas Shooting Club to do the "Shoot 'em all" package and something that I always want to do is fire a .50 BMG! Then fly back to London jumped on my motorcycle raced back home for a shower and then off to work for a night shift. A few months later from about August things have very rapidly progressed and now seven months later I have clinically significant weight loss, respiratory function at 40%, I can't lift my arms and sometimes my leg gives way and I collapse. When I am on the ground it's quite an effort to get to my feet again. When I eat my swallowing ability fatigues by time I get near the end of my meal it feels like some food is in the back of my throat.

                10
                Last edited by DJW; 4 March 2021, 10:53.

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                  #38
                  Dennis - fantastic is all I can say about our trip to Budapest, we went to the thermal baths near Heroes Square, must have been 30 different types of bath we loved it ! we took old swimming cozzies then we could bin them and carry on with the sightseeing!
                  Husband Albert diagnosed PMA Feb 21

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                    #39
                    Great idea to use your thread as a blog, Dennis - nice to read x
                    ​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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                      #40
                      Great story Dennis,

                      MND can steal our functions but it can’t take our memories.

                      I’m going to do this even if it kills me!

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                        #41
                        Nine people simultaneously have onset of mnd with me makes 10. One year later we are all diagnosed with motor neuron disease. One year later three die, during the following three years six more die. One person will live for 10 years or more.

                        I am sure that I raise eyebrows when I say things like I reinforced love and joy during meditation but did you know that there are longitudinal studies (following patients) that found that patients with psychological perceived stress, depression, hopelessness, anger expression, and no purpose in life had a faster progression and a shorter survival.

                        Stay positive, love and be loved. Be the one person!

                        5

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                          #42
                          πŸ€” I think I know one of the 10%ers...

                          Add a large chunk of luck and good genetics into that mix too.
                          ​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
                            How can anyone boil down the will to live as the chosen psychological state? Following that logic if I smile and laugh 24/7 I will live forever. Life ends in death no matter what the state of mind. Living with this is hard enough without having to read garbage. 😠

                            ​​​​​​
                            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
                              matthew55

                              On the shoulder of academic giants,
                              With reverence for scientific evidence,
                              Believe to slow progression,
                              Why don't you give it a try,
                              Maybe you prefer a cry or big old sigh,
                              You choose how you want to live,
                              But please don't make such din,
                              and kick me in the shin.

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                                #45
                                Is that supposed to mean something?
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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