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  1. #11
    Forum Member Ellie's Avatar
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    Oct 2012
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    3,442
    Ooh Maz, stardom and fame If you don't want to sit in your wheelchair, can you sit in an armchair?

    Re icy lower limbs - even in summer my knees, lower legs and feet are icy to the touch! It's very common for us

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

  2. #12
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    Hi Ellie
    I have a riser recliner chair I suppose I could sit in that, its so hard when this time last year I was racing the grandkids doing head over hills.
    they are so purple & icy cold just another thing to get used to
    Love Maz

  3. #13
    Forum Member Ellie's Avatar
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    I know Maz, there are no words to describe how we feel about our failing bodies. It takes every bit of our strength and resilience to cope with this disease.

    You're the same person inside, that important part of you hasn't changed. Your grandchildren love you just as much.

    Big hug to you.

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

  4. #14
    Forum Member Gillette's Avatar
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    Quote Originally Posted by maz View Post
    Hi Ellie
    I have a riser recliner chair I suppose I could sit in that, its so hard when this time last year I was racing the grandkids doing head over hills.
    they are so purple & icy cold just another thing to get used to
    Love Maz
    Hi Maz,
    It's so hard when your body keeps changing, but not for the better. I wish there was something amazing that I could say or do to help you cope with what's happening.
    MND stinks, doesn't it?
    Dina

    Trying to keep positive, but not always managing.

  5. #15
    Forum Member
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    May 2018
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    Hi Maz,

    Good luck for tomorrow.. I am sure you will be a star and a huge well done for doing the jump.

    I think we all try to stay positive and upbeat, amazingly so sometimes but each progression really hits us hard. It's difficult not to look back at how we were and I often think I should have appreciated being active but in reality who does ?

    My feet are always freezing and weirdly sensitive so I might not have appreciated Doug's thought for today. (although no objection to the handsome man !) A hand massage would be a different story.

    All the best for tomorrow,
    Love Debbie x

  6. #16
    Forum Member
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    Feb 2019
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    Hi Maz,
    I know how you feel, this time last year I was on holiday, and enjoying walking now I can hardly walk. Every day seems to be a challenge now. And I think how do my forum friends cope. At least we are all in this together, and can help each other.
    Love to you all
    Sheila x

  7. #17
    Forum Member
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    May 2019
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    Hi Sheila
    I cannot walk at all now but there are sufferers a lot worse off than me so shdnt complain
    I am still working out this forum but I'm getting there it has helped me understand more about mnd
    Love Maz x

  8. #18
    Forum Member Terry's Avatar
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    Hi Maz,

    Hope today is going well.

    If you want any help with the forum, just ask

    Love Terry

  9. #19
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    May 2019
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    Thanks Terry
    Today went well, I think I done ok with interview, hopefully it will put mnd awareness out there
    Love Maz

  10. #20
    Your interview was brilliant Maz!

    Thanks for the link Ellie.

    Doug

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