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Thread: Quick Hello

  1. #1
    Forum Member
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    Quick Hello

    Good Morning Everyone,

    Like most people using this site, I never thought I would have to, but here I am in a similar position to many of you. That is trying to come to terms with being diagnosed with MND.
    At this introductory stage it's hard to know what to write as I fear that once I start it may be some time before I stop!
    OK, let's be disciplined about this - sum up my position in twenty words or less.
    65, keen sportsman, married 40 years, disabled son living at home, relatively early days but feeling increasingly tired and weak.
    I'm looking forward to sharing all sorts of feelings, emotions, practical advice, etc etc with you all.

    Standardbeatz

  2. #2
    Forum Member Ellie's Avatar
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    Welcome to the Forum, Beatz - sorry you've had to join us...

    As you said, it's early days and it does take time to get your head around things.

    MND is a hungry disease, so keep your energy up by increasing your calorie intake or eating more energy rich foods and try to get good quality sleep (if you can banish those 3am monsters from your mind!!)

    You'll meet many healthcare professionals over the coming months, which can be overwhelming, but they do come in useful (mostly anyway)

    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.

  3. #3
    Forum Member Lynne K's Avatar
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    Hi Beatz, welcome to forums. Sorry about you having to join us on this horrid journey especially seeing as you have enough on your plate already. As Ellie said it takes time to get your head around being diagnosed, but you've found a safe place to share, get advice (but not medical advice) and tips. We all learn as we go along and are happy to share to help others. I hope that you have a team sorted out. These being OT, Physio, Speech Therapist and wheelchair services if appropriate for you at this stage.

    I explain to everybody who gets diagnosed to consider voice banking as soon as they feel up to it. It's important to do this while we still have a decent or half decent voice.

    Everybody's journey is different but common issues come up. So if you need advice about equipment or something else one or other of us would most likely be able to offer suggestions.

    I wish you well.

    Lynne
    Last edited by Lynne K; 9th August 2019 at 13:11.
    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.

  4. #4
    Forum Member Gillette's Avatar
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    Hello StandardBeatz and welcome to the forum that no-one wants to need. There's a huge amount of knowledge and experience on here and people are happy to share those. If there is anything you want to know, just throw out a question: there's bound to be someone who can help.
    Dina


    Trying to keep positive, but not always managing.

  5. #5
    Forum Member Barry52's Avatar
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    Hello StandardBeatz and welcome.

    As others have said you only have to ask and someone will reply to your questions. Here is a link to the tutorial compiled by our good friend Lee aka onein300.

    https://onein400.files.wordpress.com...tober20171.pdf

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

  6. #6
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hello Standardbeatz and welcome,

    I'm sorry to hear of your diagnosis. It took me quite a few months after my diagnosis to pluck up the courage to join this forum but I'm very glad I did, as I find that everyone here is very friendly and supportive.

    Please feel welcome to ask questions and share your thoughts and feelings as often as you would like to.

    Love and best wishes to you and your family,

    Kayleigh x

  7. #7
    Forum Member
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    Hi Guys
    I'm feeling welcomed already!

    Thanks

    Standardbeatz

  8. #8
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    Hi standardbeatz and welcome to this very friendly forum. I am sure you will find lots of advice and support on here. Best wishes Sheila.

  9. #9
    Forum Member Terry's Avatar
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    Hi Standardbeatz and welcome to the forum,

    It's really hard to come terms with the diagnosis and may take a while.

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

    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.

  10. #10
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    Hi Standardbeatz and a warm welcome from me too,

    I am do very sorry for your diagnosis. It's such an overwhelming shock and I am sure your head must be al over the place. Well done for posting because the forum is the right place for practical advice and emotional support from people who really understand. Like others, I found the first post hard because it made it all seem real but I am very glad I did.

    Take Care,
    Love Debbie x

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