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    #46
    matthew55 Yes my brother in arms, what my poem is about is this; in the face of adversity you have a chance to face it with love and joy or hopelessness and anger. It's your decision, I chose to spend my days with a positive attitude because there is scientific evidence from studies that have found that sufferers of MND tend to progress more slowly and live longer. Case in point is Ellie , she was diagnosed in 2007 and is still with us 2021, I have never seen anything other than positive messages sent with love in this forum written by her.

    You think that it's "garbage" I assume that you have searched for the studies on the internet? I also assume that perhaps this is an extension of my personality. I never surrender and I have been is a few situations that it's a miracle that I walked away from. All I ask is that you have some respect for my decision.

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    Last edited by DJW; 6 March 2021, 12:55.

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      #47
      I grew up next to the glorious Indian Ocean, I lived in a town very close to the beach. One of my passions was to surf. I started at the age of 12 and was immediately drawn to the the peace and tranquility mixed with utter terror that is the Indian Ocean.


      At the age of 18 my close friend Sean and I my decided that it will be a great idea to go surfing after storm out at sea. The ocean swell was gigantic and the waves were breaking much further out than usual. We paddled out next to the pier as there was a great rip that would help you get out to back line under normal circumstances. Backline is where the swell hits the sand bank and then wave starts to break.


      The ocean has an oscillation in terms of the waves, you get waves that are regular size waves for the weather conditions, depth of the tides according to the moon phase and tide height. There is a period where there are no waves called the lull and this is your opportunity to get out to back line where the waves usually break. There are also what are know as the set that are the bigger waves and the sneakers which are freakishly bigger than the regular waves. These bigger waves break further out due to swell size.


      In retrospect I think we should have been a little bit more cautious when we noticed that nobody else in their right mind was trying to surf. So the lull had arrived and my friend and I were furiously trying to paddle to backline. In the distance we could see great big shadows approaching, this was the set and the waves were for me gigantic.


      The first few waves we managed to paddle over the top of the wave as they had not broken yet but the waves just start to get bigger and bigger and breaking further out. Eventually we had to to duck dive under the waves. Duck diving is when you push the front of your surfboard under the wave and you hold onto it for buoyancy and you come out the back of the wave.


      However as the waves became bigger and breaking further out I push my surfboard under the water to duck dive the velocity and the power of the wave ripped the surfboard out of my hands and dragged me behind it underwater.


      When waves are this big the back of the wave has volume or more like a void of extreme turbulent water that is basically water mixed with air, you do not float in that and it's not possible to determine what direction to swim to get to the surface of the water.


      A surfboard is tethered to the surfer by means of a thick nylon leash. When you lose your surfboard for some reason you can always grab onto the leash and pull the surfboard towards yourself. So I was underwater desperate to breathe clinging onto my surfboard now in the hopes that I will eventually start to float to the surface. As soon as I popped up the next wave was on top of me. I had a very short opportunity to exhale and then take another breath before my surfboard was ripped from my hands and I gain was plunged violently into the void.


      This happened again and again. Not only was I being starved of oxygen but I was also being washed perilously close to the concrete pier and waves of the size would surely smash me to smithereens against the pier. I was literally able to touch the pair with my hand and when the lull came.


      My shoulders were burning my lungs were burning I was almost completely out of energy but I mounted my surfboard and I paddled back out and I caught a wave in. Rather disappointingly though it was the biggest it was not the best wave that I've ever had. That's a true story of when the thing I used to love the most almost killed me.


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      Last edited by DJW; 6 March 2021, 16:58.

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        #48
        DJW Erm, you're going to have to break up that block of text if you want everybody to be able to read it - it's particularly difficult for eye gaze users to read swathes of text.

        If you just edit it with double line spaces between paragraphs please, that would be great.

        Thanks! 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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          #49
          Originally posted by Ellie View Post
          DJW Erm, you're going to have to break up that block of text if you want everybody to be able to read it - it's particularly difficult for eye gaze users to read swathes of text.

          If you just edit it with double line spaces between paragraphs please, that would be great.

          Thanks! xx
          That never occurred to me. Thanks for pointing it out.

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            #50
            Ellie is that better?

            X

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              #51
              Originally posted by DJW View Post
              In retrospect I think we should have been a little bit more cautious when we noticed that nobody else in their right mind was trying to surf.
              You were 18 and immortal - of course you were going to πŸ„β€β™‚οΈ in those conditions 😁

              And thanks for the paragraphs - I can read all about your adventures now 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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                #52
                Ellie I have a plethora of life stories I intend to post ...

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                Last edited by DJW; 6 March 2021, 16:59.

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                  #53
                  It lost something being in first person if I was going to pick hairs. πŸ˜‰x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #54
                    matthew55 Thanks mate πŸ‘ is that split hairs or pick hairs? 🀣 X

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                      #55
                      Part 2 The surfing story.

                      In this installment I will tell you about my best wave in my life. I was in my early 20's and I was in the peak of my health and fitness. I was always in the ocean, whether that be surfing, open water swimming or body surfing.


                      I was living in a terraced third floor flat that had a large balcony overlooking the ocean. It was possible to throw a tennis ball in to the beach sand from the balcony. Being on the east coast I would have my morning coffee on my balcony and watch the sun rise over the Indian Ocean.


                      The day was a perfect spring morning. There was a gentle off shore wind enough to make it rain drops of sea water over the back of the wave when it broke. This generally the wave better to surf. The sun was maybe 15% risen over the horizon and the water was as smooth as a glass.


                      I had sitting at backline and spotted a sand bank much further out, that caused a sneaker (freakishly bigger wave) to break. I paddled over to the spot and waited. I was sitting on my surfboard, the sun was both shining directly on my upper torso and face was well as reflecting off the ocean. It was just such a tranquil moment.


                      A group of surfers where at the backline and must have thought I had lost the plot or be a beginner surfer waiting so far out with apparently no waves breaking anywhere near where I was.


                      Then the moment I had been waiting for, I could see in the distance the set was on it's way, my heart started to raced with excitement and anticipation, I paddled to make a small adjustment to my position. The wave was jacking up on the sand bank I gave a short hard paddle and I could feel it was time to stand up and ride the wave. It was about 9 foot drop from the top to the bottom of the wave.


                      The acceleration was phenomenal as I dropped down the face of the breaking wave, it was a right hander. That is when you are facing the shore the breaking wave is to your left and unbroken wave to your right. I did a sharp turn and raced along the face of this amazing wave. I touched the face of the wave with my right hand to slow me down a tad.


                      The lip of the wave flew over my head and I was standing on my surfboard about 2 meters inside the tube of the wave. I could hear the echo of the breaking wave inside this extraordinary and surreal event. The wave was as smooth glass and I should see the sun through the wave, it also illuminated the face of the wave I was riding making it appear somewhere between emerald green and turquoise.


                      Looking down the magical tube of water I saw another surfer gesticulating and shouting in celebration "woohoo!" I recognised him, Mikey was an old school friend I had lost touch with. I was stoked out of my mind.


                      There is no point to doing anything if you can't share it with someone and being watched doing the thing you love and doing it well makes it even more enjoyable. This is the story of my best and most memorable wave. This is my happy place.

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                        #56
                        πŸ€” Freemantle? Rockingham?
                        ​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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                          #57
                          Ellie The Republic of South Africa, Umhlanga Rocks.

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                            #58
                            Have any of you watched escape from Pretoria? I have family out there before anyone starts. 😁x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #59
                              matthew55 do you recommend it? I have seen the title on Amazon prime. X

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                                #60
                                It's a fascinating film and I definitely recommend it. πŸ˜πŸ‘x
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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