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Thread: Need advice.

  1. #1
    Forum Member Tim-griffiths's Avatar
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    Need advice.

    Hi, my name is Tim, my wife has just been diagnosed with mnd and given a maximum of 2 years, at the moment our emotions are all over the place so I apologize in advance if I'm not in the right state of mind.
    Just unsure how to cope at the moment and unsure if at this early stage of the disease we can claim any benefits
    Any advice would be greatly appreciated
    Tim

  2. #2
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    Hi Tim,
    Your emotions are bound to be all over the place! The forum is the right place to be to seek advice and vent your feelings. Welcome!
    Yes you should be able to claim benefits.
    Hopefully now that your wife has been diagnosed, you will be put in touch with lots of agencies who can advise you.
    I think, too, that you'll find that many many people outlive their predicted life span.
    Take each day as it comes, do things that you both want to do and keep your sense of humour!
    Take care,
    Bern x

  3. #3
    Forum Member Terry's Avatar
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    Hi Tim and welcome to the forum,

    Sorry to hear about your wife's very recent diagnosis and both of your minds must be all over the place.

    As regards to claiming benefits, a lot depends on your wife's ability at the moment and her age.

    Don't take to much notice of the time scales that they give you as you just can't tell.

    Please feel free to ask any questions or share your thoughts.

    Best wishes, 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.

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    Welcome Tim

    You have found the right place for advice, support, and friendship by people that know, and understand what you, and your family are experiencing.

    All the best to the both of you in the days ahead.

    CCxx
    .

  5. #5
    Forum Member Tim-griffiths's Avatar
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    Thank you both.
    At the moment I'm feeling frustrated, angry, despair, hurt, ect.
    Although she has muscle wastage, it hasn't stopped her doing anything, bugger speech is difficult to understand a lot of the time.
    The amazing thing is that last Christmas she was fine in every respect so it's only been these last ten months and I'm scared that if the deterioration is in the same time length I'm not sure she will be here next Christmas.
    I'm desperate to cry but keep stopping myself, sometimes I think I should go out and just have at fight ( maybe would have if I wasn't 59 ) just to get rid of some of the frustration and anger, is this a normal reaction ? Not sure, but it's how I'm feeling.
    Tim

  6. #6
    Forum Member Tim-griffiths's Avatar
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    Thank cc,
    maybe I just need to talk and cry but it's difficult to talk honestly about your feeling with family and friends, for no other reason than upsetting them more than they already are

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    Hello Tim,
    I am so sorry to hear of your wife's diagnosis. You have definitely found the right place to come to for support and advice. My husband was diagnosed October last year and I can assure you that I have gone through a whole range of emotions which I have shared on this forum and with my friends. I don't know what I would have done without my forum family.
    I send you all my best wishes
    Fru

  8. #8
    Forum Member Terry's Avatar
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    Hi Tim;

    What you feel is so normal, you won't get your head straight for a couple of month sand even then you will still have your moments.

    Have you seen a speech therapist, there are talking machines applications that your wife can use on a tablet computer.

    It is good to talk and try to let go of your feelings. Hopefully you can open up to your family but if you need someone else, there are others around that can help you. Maybe ask and speak to your GP.

    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.

  9. #9
    Forum Member Streetwise's Avatar
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    Hello Tim yes anger is normal , it comes after shock ,you're beginning the stages of grief ,I didn't have it as I'm autistic ,so I view things like A small child ,my default is anxiety and panic.
    The Neurologist told my mam 20 years ago ,that she had 18 months to live -she lived three years .Stephen Hawking has lived over 40 years , my mam progressed unnervingly But she lived 18 months longer than the neurologist said .
    At the time there was barely common knowledge about motor neurone disease, we knew about David Niven he had the same form .

  10. #10
    Forum Member Barry52's Avatar
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    Hi Tim and welcome.

    I understand your emotions and please take heed from what others have said regarding prognosis as we are all different in our rate of progression. I assume your wife is of a similar age as you so she will be entitled to claim PIP at the full rate, assuming she is not at work. The value of this is £141.10 per week. This includes the mobility element which can be used to obtain a Motability vehicle provided she is under 65. Make sure you claim under the special rules system as the DWP have recently approved that claimants diagnosed with MND do not have to be assessed and the claim will be fast tracked.

    Best wishes to you both.

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

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