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Thread: Hi Im sue

  1. #1
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    Hi Im sue

    My husband was diagnosed with MND yesterday I cannot explain the shock and distress we have been through the last 24 hours we had just planned our retirement adventures and this has hit us quite hard.
    I tried looking for what we could claim as I still work and want to stay at home with my husband but I was like a headless chicken and got no where.
    Any info would be grateful and we had also planned a trip abroad which we had booked but the insurance prices were ridiculous now I have added mnd as a medical condition.

  2. #2
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    Hi Sue,
    Really sorry about your husband's diagnosis. You'll be experiencing a whirlwind of emotions.
    I, too, was diagnosed a few months before retirement. We had a holiday to Lake Garda booked and we still went. We got assisted boarding on to the plane which was great. We got travel insurance. My husband shipped around online. It was called insurancewith. The MNDA can probably advise you too.
    I had a benefits adviser from the local MNDA who came to see us fairly soon after diagnosis. Your husband should apply for PIP. Once that is awarded, that then leads on to you being able to claim Carers Allowance.
    There is so much information and others on the forum will add to this.
    Take care,
    Bern x

  3. #3
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    Hi Bern
    Thanks very much we will look into the insurance.
    We have had no contact yet as just been confirmed with mnd but will hopefully hear something over the next day or 2.
    Im just thinking of giving up working as have to wait another few years for my pension so need to know what I can claim.
    Will look at travel insurance as I think we still need to go. x

  4. #4
    Forum Member AndyB's Avatar
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    Hi Sue
    The diagnosis comes as a shock to all of us. The worst part for me was being given the diagnosis and being told a MND nurse would contact me within a few weeks. Those few weeks were awful, my wife contacted the MNDA who sent us lots of information about the illness but we were still in a state of shock and panic. Once my nurse had arrived on the scene to explain about the disease we felt much calmer.
    The disease affects each of us differently, but in my case I was diagnosed at the end of May 2016, I'd had a dropped foot for about 12 months by then . 18 months on I have deteriorated but I can still walk even though it is becoming more difficult. As I deteriorate I just adapt to to the changes. I think the important thing is to try to remain positive .

    Your husband should be able to claim PIP if he is less than 65 years old.

    You will get over the shock of the diagnosis , though there will still be times when it upsets you. I have my occasional meltdowns. I used to be a keen walker and cyclist but this disease has robbed me of that, so I just cling to memories of better days. I just need to find a new pastime now.

    I hope as the days go by your emotions will settle down. You'll find plenty of friendly advice on this site from people who in some cases have had this illness for a long time.

    Love Andy

  5. #5
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    Not trying to pry but do you have mortgage or life assurance with critical illness cover. If so then claim on this but be ready to fight for it. My wife had critical illness cover but the company refused to pay out stating that the diagnosis could not be proved as being "Life Limiting" ie less than 12 months life expectancy. We appealed this with them and surprise surprise we LOST so we appealed to the ombudsman who got in touch with the company within 1 week and HEY PRESTO they paid out immediately with a grovelling letter of apology.

  6. #6
    Forum Member Barry52's Avatar
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    Hi Sue and welcome to the forum.

    Sorry to hear about your husband’ diagnosis and I can understand your emotions as people living with MND and their carers all go through this. We do in time adjust and learn to live with it and I would suggest if you can afford to stop working then spend some quality time together and do what you both want.

    MNDA have a benefit advice service so rather than us second guessing your circumstances, contact them.
    Travel insurance is more expensive when diagnosed with a terminal illness but no one can predict life expectancy and there are several insurers who will offer cover. I suggest an annual policy if you intend to travel often. Medical questions are mainly based on mobility and breathing issues and these do not present themselves in the early stages.

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

  7. #7
    Forum Member Lynne K's Avatar
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    Hi Sue. The diagnosis is certainly is a shock. My diagnosis was recent. Our favourite past times were hill walking and camping but I cannot manage either now. I claimed PIP and I'm waiting on their decision. As others said we try to be positive but I too have occassional meltdowns. I hope that you find suitable insurance for your trip and that you have a nice holiday.

  8. #8
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    Hello, sorry to hear of your husbands diagnosis it certainly is a bombshell, the MND nurse that came from the hospital organised a welfare person to come out to the house and give us info and help completing forms etc, usually finances are the last thing to think about but it is a major factor in this horrib.e disease,

  9. #9
    Forum Member Christoff's Avatar
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    Hi Suen

    I was diagnosed in June 2015 and i have claimed the following:-

    1. Critical Illness - I had no issues with the company (Royal London) paying out. They wrote to my consultant neurologist who sent them the letter and was paid out in 4 weeks.
    2. PIP - I applied in 2017 (should have done sooner) They acknowledge letter and when paid they back date to letter of acknowledgement. I would advise getting someone to help as i was awarded higher living and lower mobility.
    3. Pension - Under some circumstances you can claim the full value of the pension due to illness.

    Like you when i was diagnosed me and my partner were in a state of shock, we have now come to terms with it and all its joys!!.

    You will find loads of support on here

    Fight your local authority for Disabled Facilities Grant, reduction in poll tax

    Take care - Christoff

  10. #10
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    Hi Andy

    Thankyou for your reply it is reassuring to hear from people that have been through the motions that we are going through,

    We had applied foe PIP prior to my husbands diagnosis but we were told to ring them when we had a diagnosis as this was a change in circumstances we spoke to them today and they said if they put the change of circumstances through we could have our payment reduced and have no payment at all have you had this happen to you?.

    We are awaiting a call for the nurse to contact us so everything is up in the air at the moment but we are trying to stay strong.

    My hubby has drop foot but is still walking around with his stick.

    I have just been to the doctors and had a note for 1 month as I am still working whilst we try to sort out what is our next step.

    Thanks again

    Sue x

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