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Thread: I'm a new carer

  1. #1
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    Question I'm a new carer

    My name is Maggie. My husband was diagnosed with MND in January. At the moment it is largely affecting his arms, but particularly his hands. He was told that he is not expected to have the use of his arms by the end of the year. I am wondering how we will cope with everyday activities when this happens. Thank fully at the moment he is perfectly mobile, but his upper body strength and his hands are deteriorating quite quickly.I would appreciate it if you would share your experience of this.

  2. #2
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    Hi Maggie
    Welcome to this forum. I'm so sorry that you have had to join us. The members here are such lovely people with a wealth of knowledge and experience. An MND diagnosis is a massive shock. You will get lots of comfort and support from being here.
    My very best wishes to you and your husband.

  3. #3
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    Hi Maggie. I agree with the previous message that the diagnosis really throws you. It's the worst possible news anybody can get. My diagnosis was approx Nov 2017 so not much earlier than your husbands. I wish you both some peace of mind. We all have our moments but try to live each day as it comes. Take care, hugs. Lynne

  4. #4
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    Hi Maggie,
    I was also diagnosed in January and my condition is pretty much the same as your husband, I wasn’t given any time scale in regard to loosing use of my arms, I live alone god knows how I am going to use the toilet, every day is hell at the moment and that’s not going to change.Sorry I’m not much help Maggie.

    Warmest wishes, John

  5. #5
    Forum Member Barry52's Avatar
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    Quote Originally Posted by John Mc View Post
    Hi Maggie,
    I was also diagnosed in January and my condition is pretty much the same as your husband, I wasn’t given any time scale in regard to loosing use of my arms, I live alone god knows how I am going to use the toilet, every day is hell at the moment and that’s not going to change.Sorry I’m not much help Maggie.

    Warmest wishes, John
    Hi John,

    I know you are hoping to move to a more suitable home and once this is sorted you can apply to MNDA for a wash and dry toilet.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  6. #6
    Forum Member Streetwise's Avatar
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    My mam i think lived by christian faith but also sheer will and guilt that she had failed me and i know from my health problems that can give you a lot of strength .
    she was diagnosed with pseudo bulbar palsy ,which progressed to A.L.S ! after she couldn't be extremely independent !anymore !I started to write things and cut things and move things that her left arm would no longer do .
    she was given a light writer which she used in her usual fashion, the form of M.N.D. she had was called classic M.N.D then !!!!which the neurologist said 18 months!!!! like David Niven !!!,Progressive doesn't really describe the speed it moved !!or the amount of damage it caused !

  7. #7
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    Hi Barry,
    , thanks for the info, can’t say I’m looking forward to the toilet situation, I don’t know where I will end up there is a shortage of suitable homes in my area, a lot of disabled people are trapped in there current homes, I just wish it was all over.

    John

  8. #8
    Forum Member Barry52's Avatar
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    Hi John,

    I know it’s not a cure but the power of positive thoughts is a great medicine. Try not to think of the future but instead one day at a time and maybe set yourself a challenge each day. It doesn’t have to be onerous and it may be something simple like doing a jigsaw.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  9. #9
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    Thanks Barry,
    I just find it so difficult to concentrate, I’ve got some counselling next week, I think I’m heading for a nervous breakdown.

    John

  10. #10
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    John:
    I was there for 6 months. Could not concentrate, could not sleep, mind racing into the future, did not eat. Counselling helped me accept my fate and focus on the 0present. I wrote letters to people, phoned people, got connected to a care team. I accepted that if I have a few years left let me squeeze value out of them. I developed a saying '1 in 4'. Meaning squeeze 4 days, months, years into 1. I WAS HELPED BECAUSE I WENT ONTO ANTI_DEPRESSANTS. They slowed me down and helped me sleep. I understand your 1 arm is affected. It MAY be your other arm stays functional for a long time. I don't want to peddle false hope but a guy in my group in Surrewy had arms go and then nothing for years. He ran marathons.
    I urge you to consider anti-depressants. They helped me.
    I am in your corner.
    Charles

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