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Thread: Hello from me

  1. #1
    Forum Member
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    Hello from me

    Hi everyone

    My wonderful Mam was diagnosed 2 weeks ago with MND (bulbar). As I know you all understand through experience, this completely floored us. She had a gruff throat, difficult swallowing and was getting breathless. At her outpatient appointment (on my 50th birthday - she owes me a birthday &#128514, the doctor told us, quite bluntly what she thought it was. Mam was then in hospital for almost 3 weeks having LOTS of tests. Anyway she is very positive, even went to see Michael Buble the day after she was discharged from hospital. I think we are wrapping her in cotton wool but it is just the unknown. anyway thanks for reading this post and stay strong everyone.

  2. #2
    Forum Member Gillette's Avatar
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    Hi Lesley,

    Welcome to the forum. So sorry that your Mum has been diagnosed with this horrible disease. It can feel like a very lonely time but, if you need information or support, we are here.
    Dina

    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Lesley and welcome to the Forum.

    Sorry to hear of your mum's recent diagnosis.

    I know you want to wrap her up in cotton wool but she obviously has other ideas Good for her going to see Michael Bublť as planned - life is for living...

    Hopefully she has good healthcare support too to give advice on help available for eating/drinking, breathing and communicating.

    Take care.

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

  4. #4
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    Hello Lesley and a warm welcome to the forum.

    I am sorry for your mums diagnosis... it's such a shock isnt it ? The forum is a good place for emotional and practical advice so do ask if you have any questions.

    I can understand how you want to protect you mum and wrap her in cotton wool. Michael Buble sounds like good therapy too , however and it's good to keep planning treats and outings.

    Take Care of yourself ,
    Love Debbie x

  5. #5
    Forum Member Lynne K's Avatar
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    Hi Lesley, very sorry for your mums recent diagnosis. You must all feel overwhelmed at the moment. You have found a good place to find support, information and sign posting to useful things.

    It sounds like your mum has a lovely family. Look after yourselves as well as being there for your mum.

    Michael Buble sounds good. Building happy memories is a lovely thing to do. Lynne x
    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
    Forum Member Barry52's Avatar
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    Hello and welcome Lesley.

    Sorry to hear that your mum has been diagnosed with MND and I understand how you are all in shock since many of us have been through it. Eventually we all see a pathway and try to make the best of life, albeit a different path than what we had planned.

    My family have stayed strong for me and I find this helps to cope with the challenge.

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

  7. #7
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    Thank you everyone, it means so much. You feel so alone as if your loved one is the only one going through it.

  8. #8
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    Hi Lesley my mam has the same diagnosis is October,bulbar onset, itís so hard to get your head round xx

  9. #9
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    Hi Ruby, yes itís horrendous isnít it. Iíve now developed lovely insomnia as I have so much going on in my head.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Lesley,

    I know it is very hard to get your head around what's happening to your lovely mum and I also know how everything, and I mean everything, rushes around and around in your mind when in bed...

    Insomnia isn't good and you need all your energy to get through these early days, so I wonder if listening to a podcast, audiobook or music in bed would distract your mind and relax you enough to nod off? Of course your GP can presribe you something too, if necessary.

    Take care,

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

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