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    #16
    Originally posted by nunhead_man View Post
    Good afternoon Dennis,

    I'm with Ellie in that I take theracurmin in the hope that it will have some effect and have been following dear Dr Bedlack In the USA who is In part driving this part of the therapeutic canon.
    Dr Bedlack THANK-YOU Andy!!!!

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      #17
      Dear Dennis, it must be very hard for you after being so active and fit to be affected in this way, and to have young dependent children and wife. I was diagnosed this summer, and like you have found it a full-time job just learning about it all, and getting my head around it all. Hope you can feel supported by us fellow-suffers in this forum. x
      Diagnosed July 2020, ALS bulbar onset.

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        #18
        I have decided, in the interest of making a historical document, to keep track of my progression in a single thread. Anyone that reads this thread will have a view of my life living with illness, how I have adapted with an ever increasing challenges both physically and mentally.

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          #19
          A question that, if you are diagnosed with it, is about working. I have been working from an early age. My Oupa (grandfather) worked as a foreman for a civil engineering company and when I was round about 14 years old I would go to his big projects and work during the school holidays. One might even say that he was influence that inspired me to become an engineer. I have very fond memories of help building structures like bridges. Then on the weekend during schoo term l I would work at a local supermarket packing shelves. As soon as I finish school I started working and later as mature student studied mechanical engineering. I am currently a track engineer, and I have been on sick leave I'm due to start working again. Working for me is more than just a financial incentive it's about who I am. Previously I felt that I had lost my purpose for living but as my illness progresses I realise that in fact I can still contribute as an engineer. It is however I very challenging step for me my my hands don't work the way they used to and it is not possible to type on a keyboard or use a mouse. My strategy is this, I will be using a laptop from Tobii that has an integrated eye tracker, my voice still works so I'll be using dragon voice to text softwareand a chair that can recline there are provide neck support and hold my laptop for me to see. If my company cannot supply then I shall be try the access to work route.I'm due to start working in the next couple of weeks and I will keep you updated as to how it goes. I will be giving it a 100% to make it a success.
          DJW
          Forum Member
          Last edited by DJW; 26 February 2021, 10:44.

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            #20
            Wow good for you, if that is very important to you. Best of luck, keep us posted x
            Diagnosed July 2020, ALS bulbar onset.

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              #21
              DJW
              Forum Member
              DJW That's fantastic for you, on so many levels.

              Enjoy!

              Love Ellie.
              ​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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                #22
                Good for you DJW, I too decided to keep working for as long as possible, it does give a sense of purpose. I was dreading telling my employer but glad I did and they have been very positive, I even had a promotion which I thought they wouldn’t bother with, at the moment working from home but when we do go back have agreed to work 3 days at home 2 in the office with reviews and willingness to change as I want. And what ever IT support I need.
                you mention access to work, if you haven’t already get a referral to your environmental controls, they can assess your IT needs and send report to your employer and access to work detailing all your needs.
                The disability discrimination act is our friend,
                s
                As long as there’s golf and beer I’m happy

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                  #23
                  Hi Dennis
                  I hope it works really well for you. You have a lovely positive attitude. 😊
                  when i can think of something profound i will update this.

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                    #24
                    Coping strategies are very important to me. As the disability increases so does the mental challenge to stay positive. My personal challenge is my diametrically opposed reasoning in my head. There's the one side that believes it is possible to heal from anything. Then there's the other side and it believes in catastrophizing, and that we are all actually in hell were pain and suffering is what every living thing on earth must endure for the gift of life and our only salvation is the opposite to life.

                    When I first got diagnosed I did a lot of research on the internet and came across a lot of medical documents one of which claim that a male diagnosed with als had regained his function back to normal and is still alive without any symptoms of als. Then I found a website dedicated to people who have been diagnosed with als that had outlived their prognosis with minimal loss to function. I discuss with my neurologist and she told me that 10% of people diagnosed with mnd/als are in fact misdiagnosed. I want to be in that 10% don't you?

                    So back to the coping strategies, I like to meditate. When I meditate I like to use a visualisation and this is what I like to visualise. I am standing on a very soft sand beach the sun has risen over the Indian Ocean I'm standing at the water's edge facing the sea and the sun is reflecting off the ocean. My loved ones are with me, I feel the warm sun is on my body and there is a very gentle cooling breeze. I'm standing there my body is completely healed I am looking very healthy and strong with overwhelming love in my heart. With every breath in I feel the water from the sea rushing over my feet and as I breathe out I feel the water rushing back pass my feet to the ocean. This is like one of those dreams where you can fly or run except I am awake and I feel that sensation of happiness and well-being whether or not in fact I heal or I am in hell for and that present moment I feel a sense of joy and happiness.

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                      #25
                      How can you meditated like that?
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #26
                        matthew55
                        Forum Member
                        matthew55 I create a space that is conducive to achieve a focused mind. I either lie flat on my back or or sit on my meditation cushion. I like to personally burn some incense and surround myself with things or people that inspire me. The goal to meditation is to silence the mind. This may sound easy but in fact to not think is quite difficult. Practice however is imperative and the more you practice the easier it becomes. if you've never done it before I'd say the easiest way to start is by doing a beginners guided meditation. Give it a go.

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                          #27
                          Hi Dennis, My background/ career was a very physical one, gymnastics and judo as a child, joined the army (boy service) at 16 (Royal Engineers), learned a trade, bricklayer/concreter and after 5 years as an engineer changed my trade and regiment to the Army Physical Training Corps. When I left the army at 40, I initially worked as a swimming teacher and then back into building but changed my trade to electrician.
                          Fed up with sticking my head under floorboards and into ceilings I managed to get a job with Sheffield Hallam University as a Technician, where I was in early 2020 and diagnosed with MND. I realise that I am of little use as a Technician now and although they say they will adapt everything to suit me, I feel it is not fair on my team. I am currently 63 yrs old and in the process of early retirement through illness.
                          I have never tried to meditate, but may give it a go.
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

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                            #28
                            How does one achieve creating a space?
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #29
                              Beemer
                              Forum Member
                              Beemer good for you and I hope you find it as rewarding as I do. When I started I will do 15 minutes and it felt like a long time, but now I can do a hour and it feels like only a few minutes have passed.

                              matthew55
                              Forum Member
                              matthew55 in the picture below you will see the shrine (space) that I create to meditate. I meditate in my bedroom as it is a very light room and an area that I associate with meditation. Cape Town, Steenbras power station was the first hydro-electric pumped storage scheme in Africa. As a child I had a site visit with my grandfather and there was a lot of quartz lying around on the ground I collected some of those crystals about 35 years ago. These crystals hold a lot of sentimental value for me and you can see them just in front of my in wood incence burner. To the left and right are books written by people whom I find inspiration from. Both have overcome great adversity. Ian Gawler in the the 70s was given a 2-week prognosis after various cancer treatments including a through the hip leg amputation. He is still alive today, his story is a very fascinating one to read. Before I start meditating I make sure that nothing will disturb me, I turn my telephone off and make sure I have some privacy. In front is my meditating cushion which I sit on but obviously not that close to the incense burner. IMG_20210301_134359207_HDR.jpg
                              Attached Files

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                                #30
                                Whatever floats your boat bro 😁
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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