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Thread: Work

  1. #1
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    Work

    Hi All,

    I'm closing in on 4 years and 1 month with MND and I'm still working. I was wondering how long other people have managed?
    My wife drives me to work in our WAV, my colleagues help me to the toilet but I think my deterioration in speech is what is going to put a stop to it. Is anybody still working with limited speech?

    Redders

  2. #2
    Forum Member Terry's Avatar
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    I worked for about 9 months, Redders ;

    It would have been hard to continue my job but I could have done something different but had a early pension so didn't have to.

    Work for as long as you are able without over doing it. Remember that there are disabled rights and other groups that help you get access to work or adapt the work place. Many firms will reduce your hours or days so that you are not so tired, don't know if they have to do that legally.

    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.

  3. #3
    Forum Member JAY TEE's Avatar
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    Apr 2014
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    Halesowen, West Midlands
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    Redder, I was told probably got MND six months before 65th birthday and was retiring at 65 anyway. I was formally diagnosed with MND two weeks after. That’s just over 4yrs ago. Cannot walk and talk now still managing to eat and drink. Just had my favourite drink on hot day Enville Ginger. Best wishes John

  4. #4
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    Redders. I still work. Although its at home full time now. I was also taken into work by my wife in the wav. I had to take some time off work recently and during that time off, I lost all confidence in going to work. I was also mindful of what it was doing to my wife backwards and forwards each day. My company agreed to me working from home full time. They have been very good. My speech is ok still. But walking and arms not so good. My advice to you is keep working as long as you can. U can get machines to help you say the words. It takes a bit longer to get the words out but thats ok.

  5. #5
    Forum Member AndyB's Avatar
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    May 2017
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    Hi Redders

    2 years on from diagnosis, I'm still working. I'm actually at work now (on my lunch break).
    I have started working from home a day or two each week as it makes things easier for me, but I like coming in to work to keep things normal.
    I have to use crutches to walk and I have a WAV which is fitted with hand controls since my feet doing really work too well anymore, so I can still drive too work.
    Each day when I arrive at work our lovely receptionist comes out to me to carry my belongings into the office.
    The worst part for me is when people who don't know I have MND ask me what I've done. When I tell them I have MND they don't usually know what to say to me.
    My speech is unaffected at the moment

    Best wishes

    Andy

  6. #6
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    Jun 2018
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    was diagnosed 3 weeks ago. doctor said at the time i'd work for 6 to 12 months. right now i'm still doing 6 days a week (its my firm)my wife drops me off and I have a motor scooter at work , my staff assist. it works, it keeps me going. I will cling to it as long as I can.

  7. #7
    Hi Redders, I'd suggest trying out some eyegaze software to see how you get on with it. This may enable you to stay at work longer. My husband loved going be work and like you got lifts to and from work. When he lost use of his hands/arms he used speech software. Get in touch with Access to Work and see if they can help. Unfortunately they were having mass redundancies at his work last year so he took early retirement. His workmates still come & visit him in their lunch break tho☺

  8. #8
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    Jan 2018
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    Kingswinford, West Midlands
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    Hi I was diagnosed January 2018 still working waiting on motability car with steering and hand brake adaptions and an automatic. Left arm and leg are weak. Struggling with shoulder pain wearing a shoulder support and using a stick for reassurance that I won't fall over. I work in a special school so my job is demanding but I am going to do lighter tasks for as long as I can . I've been there for 30 years and I love working there. I have been looking into pensions and the Employment Allowance scheme has everyone got advice about these.

  9. #9
    Forum Member Barry52's Avatar
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    Mar 2012
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    Newark on Trent
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    Hi Ginger,

    I guess you may have looked at this website https://www.gov.uk/

    I suggest you speak to the MNDA connect team and they will advise you. One thing many of us have learned is that the paperwork can be daunting.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  10. #10
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    Hi Barry yes I've looked at the gov website. I've been in to work today and I'm going to see the Education OT to assess what duties I can do. All a little scary want to stay working for as long as I can. Also been told there is a delay on my motability car ordered it April not going to be ready until September. Could do with it in August so I can practise driving it with steering adaptions and being an automatic car which I've never driven. Ready for returning to new school year in September. I will contact MNDA connect team have contacted them several times for advice. Best wishes Ginger

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