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Thread: Hello I'm new to MND

  1. #1
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    Hello I'm new to MND

    My husband was diagnosed in January and for a month the subject never left my thoughts. Not only 'how?', 'how long?',
    and 'what will happen?', but also how to cope with managing communication with my grown up children. Now 4 months on my husbands condition is obviously deteriorating from the shoulders down, but especially his hands. I have experimented with trying to function without the use of my arms - and can't imagine how we will cope. I now no longer spend my entire time thinking about my husband's MND and try to make his day to day life as stress free as possible, but wonder how we will manage when the time comes.

    Does anyone have any experience of this particular loss of function? I would love to hear from you. I'm pleased to say that at the moment it is only his arms which are affected.

    My children, extended family , friends and neighbours have all been wonderful and we are lucky to be surrounded by people who care.

  2. #2
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    Hi MEJ
    Welcome to the forum, I'm sure you will get answers to your questions from the many lovely people on her with similar symptoms. Unfortunately I can't help because my arms are still working at the moment , it is my legs that are affected first .
    I just wanted to welcome you
    Best wishes
    love Chris

  3. #3
    Forum Member Ellie's Avatar
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    Hi MEJ,

    I have no use of my arms nor hands so I rely on others to do nearly everything for me - from dressing & showering to feeding me and giving me meds, and everything in between. I do have a wash & dry loo seat (Bio-bidet) which is highly recommended!

    I have eye gaze on my PC which gives me text-to-speech, as well as full access to email, the Internet, my photos, videos, files & programs exactly the same as I had before.

    It's tough but I am used to it by now. Function gradually fails with MND, so you do have time to adjust to each new transient stage, even if that stage is brief, unlike a traumatic spinal or other injury where limb function is gone in seconds.

    Has your husband been assessed by his OT recently?

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
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    Welcome, my daughter 33 was diagnosed in Sept of last year 3 months after having her second baby, her left side is affected the most needing a rollator inside and outside and her left arm and hand is very weak so she can no longer bath or carry her baby, this disease is horrendous. We are trying not to think too far ahead and taking each day as it comes and you are right in what you say about trying not to think about it 100% of the time and trying to keep things as “ normal” as you can, it is great you have such good support around you, I wish you all well.

  5. #5
    Forum Member nunhead_man's Avatar
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    Quote Originally Posted by MEJ View Post
    'how?', 'how long?',
    Yeah - me too!

    Concerning loss of function I'm much earlier in the process than is Ellie - have lost some function in my left hand, arm and shoulder now.

    Things I'd add to Ellie's post is that my MND is weird in that it seems to hit one of the pairs of muscles that e.g. opens and closes my hand – but not the other.

    So I'm trying to use the one that still works on the use it or lose it basis as lack of use causes muscles to waste just as cutting off the nerve supply does.

    Had you thought about using things with straps across his wrists if he has any function left in his wrists but not his hands for example? In my left hand I have function in my wrist but not my fingers so I'm using cutlery with a strap across the back of my hand.

    The occupational therapist and physiotherapist have been really helpful for me in sorting this out.

    My wife who I guess will eventually become my carer manager has her moments but because this is been going on for about three years for us the worst of it is we just don't know - but then if we did know? ......
    Andy

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

  6. #6
    Forum Member Barry52's Avatar
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    Hello MEJ,

    Sorry to hear about your husband but I am pleased you are concentrating on making each day as good as it can be for him. It can be as frustrating for the carer as it is for the patient but your time is best spent on seeking solutions to adapt to the physical changes rather than thinking about why and what if.

    It is important to have a good team around your husband as they will organise the best way to manage the symptoms of MND and don’t forget the wealth of experience members of this forum have. Remember to look after yourself as well as your husband.

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

  7. #7
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    Hi Mej,
    I was also diagnosed in January, and have lost the use of my right hand and arm, I live alone up 4 flights of stairs and have no carers, tried to be proactive in asking council for help in finding suitable accommodation and was told I would be assessed when my legs go, so no help there. I feel isolated and mentally drained with this disease and it’s never ending complications, so I really understand your concerns about what the future holds, it’s a living hell trying cope with this, as long as you both have each other I hope you can deal with things better as things progress.
    My very best wishes, John

  8. #8
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    Hi MEJ,
    Welcome to this wonderful forum where you will get loads of support. My husband was diagnosed nearly two years ago with lower limb onset ALS/MND. We are living with MND and take one day at a time. We try to keep stress to a minimum too but having recent works done to the house has worn us out a bit. We are lucky in that any advice we need is only a phone call or a click away. I feel well supported.
    My very best wishes go to you both, Fru.

  9. #9
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    Thank you for advice. Initially our GP made a referral to an OT, who rang and offered my husband help. Unfortunately my husband said he didn't need it and he would call back when he believed he did. That was 5 months ago and my husband who previously was so practical and a planner at work and by nature, has 'changed his spots'. I have tried to make this all about him, but I don't want to be in a position are struggling unnecessarily.

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