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Thread: New Guy :)

  1. #1
    Forum Member
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    New Guy :)

    Hi everyone, just tipping my hat.
    After being diagnosed on 7th January 2020, I thought I would look for a forum on MND, and here you are.
    I have already had a trawl through some posts in order to get some questions answered, and so far the forum has been very useful, thank you.

    I am 62 years old and have been struggling with my arms/shoulders for about a year to date, and after some nagging from her indoors, I went to see one of our physios (Sheffield Hallam University) who said I should see a doctor. After a visit to the doctors I was given an appointment with a neurologist for 5 months later (Dec 2019). After two months my wife discovered that she could use her Westfield account to get me in earlier (like a couple of days later) to a private doctor. That was all that was needed to get me going back onto the NHS system and the ball rolling regarding assessment and treatment.
    Since then I have had numerous tests and a 2 day hospital stay and now been diagnosed with MND.
    If I had waited with the NHS, I would have had my first doctors appointment by now and would be ready for a physio appointment.

    I am still working as a Technician at Sheffield Hallam University, where we set up for Nursing, Midwifery. Paramedic, ODP, Radiology, Occupational Therapy and Physiotherapy classes.
    Currently I am unable to reach and hold anything above my shoulder level, but my grip and walking seem fine.
    I am interested to know what my options are regarding work, how long can I work for? Should I work? What benefits are there to continue working? etc

    Thank you

  2. #2
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    1,341
    Hello Beemer,

    Sorry about your diagnosis but a very warm welcome to you and your wife.

    Your questions about working are good ones but not straight forward to answer as MND affects people in different ways and at different rates.

    Therefore, it's not always easy to predict how long each of us will have the ability to continue working.

    Also, It's often a personal decision to make because some people might need to work for as long as possible due to financial reasons and/or because they enjoy their job.

    If you wish to continue working your employer has a legal responsibility to make 'reasonable adjustments to your workplace', as explained on the Citizens Advice Website:-

    http://https://www.citizensadvice.org.uk/work/discrimination-at-work/taking-action/asking-your-employer-for-changes-to-help-if-youre-disabled/

    It might be worthwhile looking into the provisions of any pension schemes you are a member of (e.g. you might be able to take early retirement on ill-health grounds) and any life insurance policies you have (e.g in case you can make a claim now, due to your diagnosis).

    Concerning benefits, Personal Independence Payment (under state pension age) & Attendance Allowance (over state pension age) are disability benefits that can be applied for whether you are working or not (they are not means tested).

    Further information (including details of the MNDA's benefits advice service) can be found on the following 'Benefits and Financial Support' webpage:-

    http://https://www.mndassociation.org/support-and-information/health-and-social-care-services-for-mnd/benefits-and-financial-support/

    Best wishes,
    Kayleigh

  3. #3
    Forum Member Ellie's Avatar
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    Oct 2012
    Posts
    3,636
    Sorry you've had to join the Forum Beemer, but a warm welcome to you.

    I presume you're attending the excellent MND Clinic in Sheffield?

    Work: Ah yes, that old chestnut! There are different factors to consider - physical ability & demands of the job, finances and what your job/working means to you.

    If you want to keep working but find your specific job difficult to do, speak to Occupational Health/your employer about making reasonable accommodations or adaptations.

    Given your age and how your pension may be affected, it's worth getting advice on that. MND Connect Helpline might be able to give you advice on any benefits you are eligible for.

    Some of us want to keep working as long as possible, while some of us say a quick, "See you, I'm off" !! There is no right or wrong answer, just whatever suits your situation best and, most importantly, what you feel happiest doing.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member
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    Jan 2020
    Location
    Wiltshire
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    12
    Hello Beemer
    I have recently been diagnosed and have been mulling over the same question, I'm not too bad at the moment, spilt hands, slight limp, and some restriction on my shoulder, but I sit at desk in front of a computor, so nobody has really noticed, personally I'm not ready to say anything, and agree with Ellie you have to decide, you know your colleagues and management structure. I feel in control at the moment and want to keep everything as normal as possible and telling work so early in this journey just adds additional pressure which isn't wanted.
    Not advice as such just my opinion
    Shaun

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