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  • Hayls
    replied
    Awww thank you Ellie, your so right, he’s always checking I’m OK and every slight cough I have, he’s a rabbit in headlights, he’s worrying about me and I’m worrying about him worrying too much lol, we are a right pair
    I’m dreading the drinking more and more, Cat, I’ve had similar concerns about the procedure but I must admit my worry multiple times a day of wondering if this mouthful will cause a spasm and make me block my airway/ throat or aspiration that gives me a chest infection, I’m so fed up of feeling like this that I’m ready to do what’s necessary to ease the pressure off myself, fingers crossed.
    As I’m newly diagnosed, I’ve been told there is a group locally and there was no meet in August so first meet is the 24th September, my Speech and language therapist explained that many members are not near my age however I explained that some days I feel 100 and some days I’m 21 again so I’ll love to meet anyone of any age because I believe we are as young or as old as we feel, I have no idea how to PM but it’s nice to meet you

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  • Catsparkle
    replied
    I'm I'm lymington way,other half lives in southbourne. Do you go to soton MND centre or is there a dorset alternative? Anyway, feel free to pm me
    Everyone does say the peg/rig helps ease worry, just like my Walker does , there's always that bit of adjustment before you see it prevent something or make things easier and really rate it..

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  • Ellie
    replied
    Hayls, you won't know yourself once you have a feeding tube!! It takes the daily stress away re drinking enough etc. and it'll be a relief for your fiancé too, not to see you struggle.

    Best wishes to you both.

    Love Ellie.

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  • Hayls
    replied
    Hello Cat,
    Yep, I live in Bournemouth but my Fiancé lives west Dorset so I’m half and half, what part of the neck of the woods are you

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  • Catsparkle
    replied
    Thankyou x youre from my part of the world i think, Bournemouth way?

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  • Hayls
    replied
    My MND started with swallowing and voice and has started to go to my limbs, luckily my breathing is still unaffected, my consultant has referred me to have one fitted ASAP as I’m struggling to drink enough, I wish you lots of luck, I’m looking forward to mine so it’s less of a worry further down the line, I hope it all goes well, big hugs

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  • Sheila
    replied
    Hi Lisa,
    Sorry your appointment didn't go to well. It's one thing after another isn't it. And I hope your cold gets better soon.
    Love Sheila.

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  • Kayleigh
    replied
    Hi Lisa,

    Sorry that the appointment yesterday was unpleasant. I expect you were glad to get lots of hugs from your lovely daughter afterwards!

    I hope you have a relaxing and enjoyable weekend.

    Love Kayleigh x

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  • Catsparkle
    replied
    Thankyou x the consultation was pretty horrible actually, a summary of my current and near future frailties including respiratory-although I knew Id been cleared , because I'd had to redo my night oxygen (the finger grip slipped off) she didn't have the respiratory data so had to go through that too. I don't know, I'm diagnosed autistic, so i loved the accurate information but yeah. Waiting on resp to decide peg or rig .

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  • Devonmaid
    replied
    Good to get the PEG in early. Tony is now using it for all meds and lots of fluids and x2 meals a day. He is now on thickened fluid and a pureed diet. He had no real problems post op. Take care

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  • Kayleigh
    replied
    Hi Lisa,

    I hope everything went well at your consultation yesterday.

    Love Kayleigh x

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  • Catsparkle
    replied
    Haha, going to the loo has brought me and my ex closer i think..it's the massive pants wot dunnit 😂

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  • Ellie
    replied
    Hi Lisa,

    Originally posted by Catsparkle View Post
    I'm worried about the cut and tube
    The hole is very small, only about 5-6mm wide.


    Originally posted by Catsparkle View Post
    i thought people helping me to the loo would be awful,its just normal now.
    Very true!! It's amazing what becomes "normal" isn't it??

    Love Ellie.

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  • Catsparkle
    replied
    That's good to remember , the sedation.. good luck sheila xx I'm worried about the cut and tube i think, ive still got to get to grips with that. But then i thought people helping me to the loo would be awful,its just normal now.

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  • Sheila
    replied
    Hi Ellie,
    Thanks for explaining all that to me. Now I know the different ways for the peg and rig. I see the breathing nurse on Friday. It was ok last time. But I have noticed a strange breath comes out, usually after sleeping or a nap. Maybe nothing to do with Mnd. But I will mention it.
    Thanks again Ellie
    Love Sheila

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