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    Getting involved with MND

    I am in the process of an early retirement through illness, from work and wondered if anyone else has got involved with MND projects?

    I currently work (at home) for Sheffield Hallam University, in the Health and Welfare courses as a Technician, and have offered my services as a Service User. I have already provided a requested video on the Neater Eater contraption for Occupational Therapy classes, and hope to help the physiotherapy courses with my pathetic body.
    I volunteered for the psychology research but found it too depressing, and am now assisting with research into upper limb orthosis with a team from the University of Sheffield.
    Recently also had a phone call with a view to joining the MNDA support group.
    I may not have time for work at this rate.

    Dave
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    #2
    I offer my 'pathetic body' up for any research project going - I've spent hours in fancy MRI machines, been poked and prodded in every conceivable muscle, entertained students with my very brisk reflexes - and, like you, have been a crash test dummy for physiotherapists and occupational therapists in training sessions.

    That's about all I'm good for these days ๐Ÿ˜
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #3
      Hi Dave,

      Iโ€™m pleased that you are considering involvement with Sheffield MNDA group and I hope like me you find it rewarding. I believe that our experience is best served when we can share with others, as is true with this forum.

      I retired at 59 following diagnosis in Lincoln. Later this was changed to PLS following tests done by Sheffield Hallamshire. I was looking for voluntary work to occupy my free time when it occurred to me that I could help support those people living with MND so I joined the Lincolnshire branch as committee member. I also joined the Nottingham branch as they wanted a patient perspective on the committee. SITRAN at Sheffield was looking for patient volunteers for the research advisory group (RAG) so I agreed to join them and we meet every quarter to review research proposals. Post pandemic we now have video meetings and review documents by email. The group would welcome your involvement and we may get to meet up one day.

      My wife says that MND is controlling my life given the amount of time I spend but when I sit in my chair most of the day I feel justified by knowing that if I can help others in my limited way then I avoid the feeling of helplessness myself.

      Best wishes,
      Barry
      Iโ€™m going to do this even if it kills me!

      Comment


        #4
        Originally posted by Ellie View Post

        That's about all I'm good for these days ๐Ÿ˜
        You are far greater than that with your wisdom and knowledge xx.
        Iโ€™m going to do this even if it kills me!

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          #5
          Ladies and gentlemen you are truly inspiring. Your combined efforts will put future suffers in a better place. God bless all those like you who put themselves through the poking, prodding and research studies.

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            #6
            Thanks Barry. SHU wanted me to carry on working, they were going to place all sorts of assistance at my disposal, including shorter hours to keep me on board. I know what my job used to be and I would be "carried" in this new role, so as much as I love the job I cannot continue.
            I am hoping I can at least do something that takes away the boredom of this disease and maybe help people learn about it.
            Also I am looking forward to meeting other sufferers who understand what it is like to live this existence.
            Diagnosed 2nd Jan 2020
            Both arms/shoulders affected, left worse than right.
            Progressive Muscular Atrophy suspected

            Comment


              #7
              Originally posted by Barry52 View Post

              You are far greater than that with your wisdom and knowledge xx.
              Ditto Barry, I always find Ellie's post of interest.
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

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                #8
                Thanks for the uplifting post Dave. Yes, there is plenty to do and when one starts looking into the discrimination that we disabled folk suffer, one realises that there is a mountain to climb.
                Copyright Graham

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                  #9
                  Disability awareness is too rare and it's criminal. ๐Ÿ˜ ๐Ÿ˜x

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                    #10
                    Couldn't agree more with all the sentiments above! I worked for 5 years after diagnosis, with quite a few 'adaptations' but retired 3 years ago as it was very tiring. But..definitely need to find things that continue to inspire you, interest you, give a goal or purpose. Our thoughts, beliefs, goals, purpose and bringing something to eachother, and to this table of life, is what defines us, from the smallest gesture to the greatest achievement. Mnd is a foe to be fought and defeated together, we can and are doing it, each in our different ways. Ellie talks of a frail body, but she is a Boudicca warrior of the mind! I also hate animal cruelty, especially factory farming, and I intend to use my time to raise a voice for change there. And yes, we must fight for disability awareness however we feel we can. But no-one dares feel 'sorry' for me anymore, because Im stronger than they are, in my own way๐Ÿ˜Š

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                      #11
                      Originally posted by Olivia H View Post
                      But no-one dares feel 'sorry' for me anymore, because Im stronger than they are, in my own way๐Ÿ˜Š
                      You go girl x ๐Ÿ’ช๐Ÿ’ช๐Ÿ‘๐Ÿ‘

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

                      โ€‹

                      Comment


                        #12
                        Olivia, the strong woman, youโ€™re amazing and so is Ellie. Both warriors, love Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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