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Thread: New Guy :)

  1. #1
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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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    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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    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 Shaun's Avatar
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    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

  5. #5
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    Thank you to those that took the trouble to answer
    I have had over a month at work since being diagnosed, and work has been superb.
    I may have to alter my work type but adaptations are being sourced, like a desk that can be raised so that I can work on the computer stood up if need be.
    After a further visit to the professor, I have been told it is PMA I have, which should give me more time at work until I can sort out my finances.
    Applications have been made for PIP and even for a Blue Badge, so just the waiting now.
    I am in the process of selling my motorbikes of which I loved riding, but had to stop because I could not move even the lightest one back into the garage, and even dropped it a couple of times and not able to pick it back up.
    I used to cycle to work, but had to stop that because when I put the brakes on I flew over the handle bars because my arms could not stop my body moving forward.
    I have recently been looking at dressing aids because I cannot do the top button up on my trousers. Any ideas on this one?

  6. #6
    Forum Member Shaun's Avatar
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    Hello Beemer
    the dreaded buttons, have you spoke with your MNDA visitor, they may be contact with a local tailor/seamstress that can make alterations, or they may be able to supply you or recommend suitable aids.
    Shaun

  7. #7
    Forum Member Barry52's Avatar
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    Hi Beemer,

    If you have someone who can sew then a press stud fastener or Velcro can be useful for trousers and shirts. Your diagnosis of PMA means you have time on your side.

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

  8. #8
    Forum Member Ellie's Avatar
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    Hi Beemer,

    Sorry you've having to sell your beloved bikes.

    Re trousers: I know you're only a young 62yo, chap but many places sell perfectly good pull-on trousers and they aren't all 'old grandad' trousers (even Next and H&M have them) Choose your battles - no need to get frustrated by pesky buttons or zips.

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

  9. #9
    Forum Member Lynne K's Avatar
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    Hi Beemer, a late welcome. I only just saw your message. Until you buy new clothes with Velcro fasteners there’s a cheap device available for doing up little buttons and pulling up and down zips. I got mine from Amazon, I think £5.99 but cannot be sure. Definitely under a tenner. I wouldn’t recommend poppers. I struggle with them now.

    If you’ve read earlier posts you’ll likely know about voice banking. But if not put it into the search box and plenty of posts will come up that discuss options.

    Good luck with your PIP and Blue Badge applications. My PIP application was filled in by the Social Worker at my MND Clinic so straightforward. I applied myself first of all for my Blue Badge but was refused. My OT organised it as she could go in and face to face speak with the head of Department. I received it swiftly after that.

    Have you got a team of specialists supporting you? (Physio; Speech Therapist and Occupational Therapist)? Lynne
    Last edited by Lynne K; 24th February 2020 at 13:00.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #10
    Forum Member nunhead_man's Avatar
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    Hi Beemer

    Welcome!

    In respect of the difficulties I have with clothes, given I'm arm onset, I go for belt and braces.

    Luckily I've lost a bit of weight since I was diagnosed and so I can do up my suits in front of me on the bed and then pull them up over my waist using the braces and what arm strength I have left.

    How long I can carry on doing this I don't know and no idea if it would work for you but that's my two pennies worth
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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