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Thread: Hello

  1. #1
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    Hello

    So I have been using this forum for reference for several months now but have finally decided to reach out and write my first post.
    My husband has recently been diagnosed with MND, aged 58. I am 36. We have 1 child together (age 8) and 5 children collectively. My husbands symptoms started in November last year in his left hand. We thought it was carpal tunnel or a trapped nerve until May, when he saw a neurologist and MND was first mentioned.

    Diagnosis came in September, by which point he had lost most use of his left hand and was beginning to feel unsteady on his feet at times. Which is pretty much where we are now. He was a carpenter but now struggles to even put a screw in a wall. Thankfully he is in a managerial position so is still working, although managing the London Underground can be challenging at times.

    We haven't seen any OT or physio yet, although the referral has been sent. He was started on Riluzole at diagnosis a month ago and has been taking CBD oil since May. He is very pragmatic and doesn't complain or get overwhelmed. I, meanwhile, am very good at both!

    We haven't really told anyone yet and keeping it a secret feels like a weight to me, but then other peoples sadness and worry feels like a weight too, so I don't know what to do. It is difficult when people ask a lot of questions because I don't know what to tell them.

    I work 3 days and am at university 2 days as well as having 2 kids at home. I am struggling to concentrate or even think straight. I feel like it is all too much to manage but I don't know what I can do.

    Anyway, that is probably about all there is to say. I don't suppose there are any good answers.

    If anyone is in the Essex/London border area (Epping Forest district or nearby) it would be great to connect.

    Thank you and love to all xxxx

  2. #2
    Forum Member Terry's Avatar
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    Hi Bexxy and welcome to the forum;

    Sorry to hear of your husbands diagnoses but glad that he can still work. I understand him wanting to keep it quite but sooner or later some people will get to know.

    The Mnda have a advisory sheet on telling children. Hope hubby can accept help and equipment when it is of help.

    Please feel free to ask any questions or to just share things with us.

    There are probably Mnda groups in your area that have low key meetings.

    If you want to keep it quite be careful what info you put on here because it is a open forum that anyone can access.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Gillette's Avatar
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    Hi Bexxy and welcome to the forum. You have doubtless seen how useful and supportive it can be. Unfortunately, there are no easy answers about MND.

    With regard to your husband's wish to keep his diagnosis private, perhaps the two of you could discuss your concerns and find a compromise that you can both live with?
    Dina

    Trying to keep positive, but not always managing.

  4. #4
    Forum Member Ellie's Avatar
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    Hi Bexxy and a warm welcome to the Forum nobody wants to join.

    I'm very sorry about your husband's diagnosis and how it's affecting your own day-to-day wellbeing and functioning.

    On a practical level, is there any way you can take a period of sick leave from work to give you some breathing space? Or perhaps having those 3 days to yourself would make you worry more because you're not being kept busy? You'd know what would be best for you.

    Keeping your husband's diagnosis secret must weigh heavily on you, though as a person with MND myself, I can understand his reticence. What you don't want though is for any of the children, whatever their age, is to find out secondhand about his condition - you'd be surprised what some people (think they) know...

    Knowing how, what & who to tell can be hard so why not give the MND Connect Helpline a call and, when you both think the time is right, you'll have the vocabulary to explain what's happening. As Terry said, there are age-appropriate workbooks for children.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Lynne K's Avatar
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    Hi Bexxy, very sorry about your husbands diagnosis. I won't repeat what others have said but I second them.

    Where you on the Facebook MND site recently? Your story is very familiar. That site is huge so can be overwhelming. These forums on the other hand are more personal. I hope that you find comfort and find the advice given as helpful.
    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.

  6. #6
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    Thank you everyone for your responses. I somehow donít feel so desperate today as I did yesterday. I guess it is like that. I bought karma yesterday so hopefully that will help with my anxiety levels. And itís friday- yay!
    My husband is very good at living in the moment and not worrying about what is to come. Hopefully that will rub off on me a little.
    I hope you all have a good weekend.
    Thanks again for the support.

  7. #7
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    I am new here too...just sending you hugs. I am sorry about what is happening to you and your husband.

    Serenity xx

  8. #8
    Forum Member nunhead_man's Avatar
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    Hi Serenity and Bexxy

    Welcome from me too.

    Bexxy, being where you are, there is probably a local group that you could join for support - I find my South London branch colleagues really supportive.

    https://www.mndassociation.org/suppo...local-support/

    Bexxy I would not obsess about the secrecy issue - with my arm onset I have slowly become more comfortable about telling people what is wrong as because my development is quite slow it is not really obvious unless you look closely, that something has gone wrong.

    Telling people has generally got me a sympathetic response. Although some people just do not know what to do with it (death sentence! etc etc).

    For me, telling people is about my own acceptance of what is wrong with me and I now ordinarily tell people - also because we are having to move house as our existing house is not suitable for me living here in a wheelchair I am having to withdraw from lots of things I do locally and so that does involve telling people what I have.

    I hope this forum can offer you some more help as time goes along
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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