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Thread: Overwhelmed,Angry,Isolated,Scared.

  1. #1
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    Post Overwhelmed,Angry,Isolated,Scared.

    My wife started showing symptoms last March which gradually became worse until she was admitted in to hospital for tests last November. We were told she had MND 90% sure of diagnosis. We went back to see the Consultant 2 weeks ago and told the test from last Nov are the same but he diagnosed 100% MND.
    I left full time employment to care and have been living off our savings since Jan.We have just applied for PIPS. as a Carer with no means of income and as all you guys know this is a 24/7 role, the question is what can I apply for if anything.

    At the moment my wife has a dropped foot and weakened left leg with the right leg not far behind.

    Within a matter of months I have gone from having a great career to be thrust into this caring role.This is a bit all over the place like my head at the moment.

    At the moment I am trying to sort our finances so any advice would be great.

    Thanks
    Kev

  2. #2
    Forum Member nunhead_man's Avatar
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    Good morning Kev

    I am sure somebody else will be along in a minute, but in the meantime, can I ask whereabouts you are in the world?

    Concerning benefits have you seen this?

    https://www.mndassociation.org/wp-co...titlements.pdf

    more generally ....

    https://www.mndassociation.org/about...for-you-guide/

    Further is, there nobody else you can talk to locally? Other family members?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  3. #3
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    Hi Andy,Thanks for the links,I have just had a quick look and it seems social services need to asses but I will take an indepth look later this afternoon.

    MND Nurse is due in an hour,I will ask for her opinion etc.

    Once again thanks.

  4. #4
    Forum Member Kayleigh's Avatar
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    Hi Kev and welcome to the forum,

    I'm sorry to hear of your wife's diagnosis. There is a lot to come to terms with, and as someone who is affected by MND, I can fully understand why you are feeling the emotions you describe in the title of your thread.

    Soon after my diagnosis, I contacted my MND Regional Care Development Adviser, who was able to advise me about a range of issues, including what ongoing help and support is available for MND patients and their families in my region. The Advisers are very friendly and helpful, and you may wish to contact your local adviser, if you haven't done so already:-

    http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

    For advice about claiming benefits, the MNDA have benefits advisers:-

    http://https://www.mndassociation.org/getting-support/benefits-advice/

    In addition to PIP, you should be able to claim Carer's Allowance, and possibly other benefits such as Universal Credit. Andy has already provided links to the info on the MNDA website about benefits, and there is also information on the Government's website which you might find helpful:-

    http://https://www.gov.uk/benefits-calculators

    https://www.gov.uk/carers-allowance

    https://www.gov.uk/universal-credit

    We are a friendly forum and we try to support as much as we can. Please don't hesitate to ask for further advice, whenever you would like to.

    Best wishes to you and your wife,
    Kayleigh
    Last edited by Kayleigh; 14th March 2019 at 22:39.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #5
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    so sorry Kev, hope you got some help and information from the nurse

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Kev, sorry about your wife's symptoms, her diagnosis and you having to give up your career. It is a horrid disease that robs us all about what we thought that our futures would be like before our diagnosis. I hope that your wife can get all the help that she needs from your local services ie OT, Speach Therapist, Physiotherapist and wheelchair services. She ought get a manual lightweight wheelchair now and a powered chair later. Good luck with her PIP claim and your Carers Allowance. I hope that you have other family who can share some of the care burden so that you don't get burned out. Take care. Lynne
    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.

  7. #7
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    Hi, kev, I am very sorry to hear about your wife. I was just diagnosed in January so I know how overwhelming it all is. And it all still feels strange. But this forum has been a great help to me, lots of advice etc.
    All best wishes to you and your wife
    Sheila.

  8. #8
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    Hi Kayleigh,Thanks for the info I will take a look later today when I get a chance.
    It's great to have this forum and able to communicate with people going through the same.

    Best Wishes
    Kev

  9. #9
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    Hi Sheila, Thanks for getting in contact.The response so far has been great with plenety of advise.As you said it's overwhelming.Rabbit in the headlights.

    Thanks again
    Kev

  10. #10
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    Thanks Shrew,Started PIPS yesterday under special measures.Nurse said she can do this but had problems with accessing the forms.She gave us a number to call.All good should take 2 weeks then I can apply for carers allowance. Kev

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