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Thread: terrified of the future

  1. #1
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    terrified of the future

    Hi i am new to the forum, my mum was diagnosed 2 weeks before christmas with mnd, bulbar i think its called, it affects her speech and slowly its affecting her coughing, she struggles to cough up her secretions, and is tired all the time, breathless a lot very weak, you can actually see the muscle wastage now and im still stunned by the diagnosis and dont really know how to cope, i am terrified for what is next for her, she is my best friend and its like i am supposed to just watch her die and not do anything about it, every question i want to ask i cant because no one can answer as everyone with als is so different, she is just, in the last few weeks under the care of a team which have been fantastic and everyone is doing what they can but its so hard, does anyone know how to cope.

  2. #2
    Forum Member Barry52's Avatar
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    Welcome to the forum murrjo1.

    Sorry to hear about your Mum. It would appear from what you say that she has all the support systems in place so she will get the care she needs. Try not to think of your Mum dying of MND but rather living with it. If you have a hospice nearby they often offer counselling services otherwise contact MNDA helpline on Monday.

    It is quite common for the people close to the patient to struggle with the disease diagnosis but there is always help nearby.

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

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    Hi Barry thanks for your reply, the hospice nurses recently visited and left a lot of leaflets, i have had no time to look but i know talking to others will help, i am trying to be positive and look at the situation a bit like you have suggested but its times like now when i cant sleep and i have time to think that i start feeling panic at what may happen and when, i think i have been reading too much on google. i also think its the helplessness that there is nothing you can do except care, you cant take it away, thanks.

  4. #4
    Forum Member Terry's Avatar
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    Hi Murrjo and welcome to the forum,

    Sorry to hear of your mum's recent diagnosis and it is normal for your head to be all over the place.

    As Barry says, try and think that she is living with the disease and take each day as it comes.

    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.

  5. #5
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    Hi Murrjo,

    Welcome to the forum and so sorry about your mum's diagnosis.
    It's all very new to you just now and you are bound to be totally overwhelmed. Don't be afraid to ask for help for yourself.
    It's good that you have the help of a fantastic care team for your mum.
    As Barry and Terry have said, try to take each day as it comes.

    Take care,
    Bern x

  6. #6
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    Hi Murrjo,

    We are six moths down the road from you, my husband was diagnosed with early onset bulbar last year and the world went into a tail spin but slowly things have settled down, the care team have been fantastic and this site has been great for information, I have come round to thinking that the time we have now is more important than thinking of what might happen in the future and my husband is always saying it could have been worse an accident and he could have been gone, we have been lucky if anybody with this can be as he seems to be progressing slowly his speech has gotten worse with me not really understanding a majority of what he says now but we are prepared with electronic devices for that we can't stop the progression but we learn to live with it, be kind to yourself and give yourself time to adjust, you all will have bad days but these will settle down to less often as you get used to it, this is just my personal view and hope i haven't come across as preachy, as this is the time we have left we want to enjoy as much of it as we can.

    Thinking of you all,
    Mandy

  7. #7
    Forum Member Ellie's Avatar
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    Lovely post Mandy, thank you.

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

  8. #8
    Forum Member Ellie's Avatar
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    Hi Jo and welcome.

    Sorry to hear of your mum's diagnosis. It can be overwhelming for the first few months.

    Just to add that there are devices available to help with mum's breathing, coughing and communication which improve her quality of life and, by default, your life too as she'll be more comfortable. Her team will organise these.

    If the hospice offers counselling for family members - most do - please talk to a counsellor, it should help you enormously.

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

  9. #9
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    Hi Murrjo1,
    I sympathise with your situation, I am in a similar position to you only the other way around it is my 33 year old daughter that has been cursed with this disease, she became a mother for the second time in May and we still can’t believe this is happening to our family, I constantly think of what’s to come and worry for her children although I know we should be living for the present.

  10. #10
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    Thanks to all of you for your kind replies, i know its not just my family there are so many others suffering and with such bravery, i am trying to take one day at a time but it is early days yet, when i hear what other people are going through it beaks my heart it is such a nasty disease and it seems so final

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