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Working from home with MND?

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    Working from home with MND?

    Happy new year everyone

    I am looking for something worthwhile to do and use my brain ! I am not mobile and barely verbal but have an eye gaze and am quite computer competent and I need something to do !

    anyone else in the same situation? Any ideas?

    Thanks x Sarah

    Hi Sarah and happy new year to you.

    This is by no means a comprehensive list of things to occupy your time and mind but I compiled my life story pre diagnosis. It took me several months and involved scanning old photos so that I could include pictures with a story line and then produce a book. I had a lot of fun doing this and it invoked many emotions during the process.

    As I am now 7 years in with MND I want to start the sequel which will include all I have achieved following diagnosis. At least I won’t have to scan old photos!

    Whatever you decide to do Sarah I hope you have pleasure doing it.

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


      Hi Barry and Sarah,

      Barry - that sounds like a wonderful way of spending time and such a special and personal way of having a memoir of your life story.

      Talking of old photos, I have got many envelopes of old photos of family holidays etc that I still need to put into a photograph album. Remember the days of pre-digital photography, when we used to take our roll of film to Boots, or similar, to be developed. It was so exciting going to collect the photos but, of course, it was a bit pot-luck because, in those days, we couldn't view or edit the photos before they were printed - sometimes many of them were not as we thought they would be! - often the top of Auntie Edna's head had been 'chopped off' or young Eddie had decided to 'look the other way' just as we were about to take the photo. It is always special to do that old-fashioned thing of looking through a photograph album with family or friends.

      I think that I'm going to use some of my favourite digital photos to compile a photo book. I have not done this before, but I have looked online at websites that offer this service and it looks like quite an easy and fun thing to do. I particularly like these examples on the Snapfish website:-

      I think it is great to look at photos on my laptop, but It will also be lovely to have a professional looking book with my favourite photos in.

      Happy reminiscing!

      Kayleigh x
      Last edited by Kayleigh; 5 January 2019, 15:35.


        Hi Sarah;

        It is good that you are looking for things to do.

        You could ask Mnda connect and see if they have any work. I know one of members, worked as a membership secretary of a voluntary organisation called PINNT which is run solely by volunteers and is aimed at helping patients who are fed artificially.

        I guess you will have to stick to volunteer roles for a start. So that would mean mainly charities, hospice, cancer, dogs/cats, etc.

        You can play chess against me but it would be better for you to have a worth while job.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


          Hi Sarah

          Steve finished work 6 months after diagnosis. He started to write a story about his dads life, which he had been collecting information for years and was always something he wanted to do. After that he wrote his own story with input from his brothers and sisters up to the time we got married. He plans to do part 2 soon, but is harder as he now uses eye gaze which can get tiring. He also wrote quite a few poems to get thoughts out of his head about his diagnosis and what’s it means to him and his family and still does this.

          He also did some volunteer work for a local history society that needed some help with Health and Safety (this was his job before diagnosis)



            Thanks everyone
            I keep thinking about writing a book and do write the occasional poem so maybe I should get on with it but it is knowing where to start x I will contact the MND connect as well x I will also have some photos to sort out into books so I will be busy for a while x any other ideas are welcome
            Sarah x


              Hi Sarah,

              Please feel welcome to post your poems on this forum, if you would like to.

              I am in no way a professional writer, but have occasionally posted my poems in various 'threads' on the forum (the most recent being the 'happy new year' thread).

              It would be lovely to read your poems, if you would like to share them with us

              Best wishes,
              Kayleigh x
              Last edited by Kayleigh; 7 January 2019, 15:04.


                How about contributing to your local MNDA newsletter? I spend hours playing online scrabble. There are loads of short, free online courses - I've done several with FutureLearn.