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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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    Mar 2019
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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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    Oct 2012
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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 Bublé 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
    Forum Member
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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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    Nov 2017
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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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    Mar 2012
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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
    I’m going to do this even if it kills me!

  7. #7
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    Dec 2019
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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.

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