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Thread: Hi Im sue

  1. #11
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    Hi Mark

    No we don't have a mortgage or illness cover but thanks for your reply glad you received the payment just shows that you can succeed if you keep trying.

  2. #12
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    Hi Christoff

    Thanks for replying we applied for PIP before our diagnosis but we rang them today to say we had a diagnosis and they said if we change the circumstances of the claim we could loose all the payment or have the payment reduced, so we said we would hold fire until we have seen the nurse or had some advice.

    Trying to stay strong

    Sue x

  3. #13
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    Hi Barry

    Thanks or the advice I am in the process of finishing work just sorting out what we can claim prior to finishing on sick leave at the moment to sort ourselves out.

    Sorted some travel insurance as recommended by Bern which was most helpful so we will be going away quite a lot over the next 12 months.

    I will contact MNDA for benefit advice.

    Thanks

    Sue x

  4. #14
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    Hi Andy

    Just noticed you are in Stone Staffs we are in Hednesford Staffs ,

  5. #15
    Forum Member AndyB's Avatar
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    Hi Sue

    Firstly, I hope you and your husband are slowly coming to terms with the illness , though it does take time.

    Regarding PIP, I didn't apply for PIP until after my diagnosis, I wasn't aware I could claim anything until my nurse told me that I was entitled to it. My wife called the DWP and applied over the phone. I think that they wrote to my Neurologist for confirmation. She told explained to them that I could only walk a short distance and I was awarded the mobility element too.
    If you have any problems claiming it might be worth a call to the MNDA as I'm sure they would be able to advise you.

    I also had critical illness insurance which I claimed against. This took quite a few months to be accepted since my original diagnosis was probable MND and they would only pay out once it was confirmed as MND. In fairness to the insurance company they called me regularly to confirm the claim was ongoing and they did payout once it was confirmed. It wasn't for a vast amount of money since the value had dropped as I aged (I didn't want to pay increased premiums and never dreamt I would actually need to claim &#128527 .

    I am still working, I have a desk based job so I can still manage , though I have been off sick for the last couple of months following a couple of falls which affected me psychologically as much as physically. I'm due back in work the week after next and my employer has agreed to me splitting my work between the office and working from home. I'm trying to keep life as normal as possible for as long as is possible.

    Best wishes

    Andy X

  6. #16
    Forum Member AndyB's Avatar
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    Quote Originally Posted by suen View Post
    Hi Andy

    Just noticed you are in Stone Staffs we are in Hednesford Staffs ,
    Hednesford ! I drove through there on Tuesday on my way to Norton Canes for a wheelchair assessment. And I was at Shenstone on Wednesday with my wife at the Staffs MNDA monthly meeting (I attend whenever I can).

    I see my Neurologist at Stafford and I also see a Neurologist at Birmingham QE. I've had scans and tests done at Stoke and Birmingham and go to Cannock for my foot support.

    Maybe we'll meet at one of the meetings.

    Andy x

  7. #17
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    Hi Andy

    we had just missed the first meeting at the hollybush and would like to know when the next meeting is if you could let me know where we can find out when they are.

    Are you taking Riluzole as my hubby started taking it Yesterday and did you notice any difference if you are taking it.

    Hope we will see you at one of the meetings.

    Sue x

    Sue

  8. #18
    Forum Member AndyB's Avatar
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    Hi Sue

    The meetings take place first Wednesday of each month in the restaurant area at garden centres. The next one will be at Hollybush Cannock WV10 7LZ on 7th Feb.

    The MNDA will probably contact you but you could contact Sheila Lamisere on 07955 182054 (selamisere@gmail.com) who is the Group Secretary.

    My wife doesn't particularly enjoy the meetings since as you can imagine there are people who attend who are at more advanced stages of the disease with a number of them in wheelchairs and others who have difficulty talking. But everyone is really nice. I take some comfort from the fact that I don't feel so alone with this disease (which this forum also helps with) but I think in some ways it is harder for the carers to see their loved ones deteriorating.

    As to Riluzole, I started taking it 6 to 8 weeks after diagnosis. The morning dose did and sometimes still does have a strange affect on me in that about half an hour after taking it I feel slightly 'spaced out' for about an hour. My nurse doesn't know of anyone else who is affected like this though so maybe it's just me. The evening dose doesn't bother me since I take it when I go to bed in the evening.

    The Riluzole doesn't improve the symptoms but it is meant to slow down the disease progression. Whether or not it does is anyone's guess but it's certainly worth trying. I also self medicate a little (Vitamin B, Vitamin D and Omega 3,6 & 9) but again whether this does any good there is no way of knowing, I just want to feel that I'm doing what ever I can to fight it.

    Hope this helps

    Andy x
    Last edited by AndyB; 6th January 2018 at 12:07.

  9. #19
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    Hi Sue
    I am also in a similar place to you. Tony is 10 years older than me so 65 now and retired, but I was going to retire in a couple years and we were going travelling in our caravan. Now this - we are in a dark place, how can we be hopeful when daily Tony gets worse. I know some of you are really brave and strong, hopefully that will come. At the moment I am wondering what to do - do I give up work. How will we manage financially - all tough things to think about.
    Mark - is there someway I could send a private message to you as I have some questions to ask about your insurance claim. Thanks

  10. #20
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    Hi Sue
    Regarding PIP. My husband had lower rate for mobility and higher rate for the other section. When he was diagnosed in the National Neurological Hospital in London in October, the specialist nurse sent off a DS1500 form which fast tracked his PIP and he got the top rates of PIP for all areas backdated to the first day we had claimed it in June. If you haven't got a specialist nurse we have a MND co-ordinator and I expect they could do the same - or your GP could as well.

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