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Thread: Sandpiper

  1. #1
    Forum Member
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    Unhappy Sandpiper

    Hi. I was diagnosed with MND just over a month ago. Although it wasn't a complete shock it is still sort of 'sinking in' what this means to me and my family. I'm reasonably OK at the moment with it affecting my legs/mobility but I can get around with the help of family and my recently acquired scooter. It seems that it's when I tell people of my diagnosis and the way it which MND progresses that it sort of hits home. However much I try to be matter-of-fact it's the little things that seem to build one on the other. Just to recognise that some of the simplest of tasks that I used to do almost without thinking now either take so much longer - taking a shower - or have to be given up all together - riding my bike/gardening/diy. I've got a tremendous support group of family and friends as well as the professionals and of course the Association. It is said that time is a great healer. The paradox is that MND is the opposite!

  2. #2
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Sandpiper and welcome.

    Sorry you've had to join the Forum.

    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 Kayleigh's Avatar
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    Nov 2018
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    Hello Sandpiper and a warm welcome to you,

    Sorry about your diagnosis. It's great that you have got such good support from your family and friends.

    Please feel welcome to join in on this forum as often as you like. I have found everyone here to be very friendly and helpful and we have a good understanding of what each other is going through.

    I hope you enjoy getting out and about using your new scooter.

    Love Kayleigh x

  4. #4
    Forum Member
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    May 2018
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    A warm welcome to the forum, Sandpiper.

    I am so sorry for your diagnosis and I know how difficult it is to come to terms with. I appreciate how hard it is to tell people because they look so shocked, which is upsetting. It's great that you have lots of support from friends and family and it sounds like you are making the most of things.

    The forum is s great place for advice, support and an occasional moan! There's lots of humour too.

    Take care and look after yourself,
    Love Debbie x

  5. #5
    Welcome Sandpiper to the club none of us wanted to join.

    But you'll find huge support and knowledge here.

    I sympathise about things one can no longer do. My walking boots and my workshop gather dust. My garden becomes a weedy forest. somehow we have to adapt.

    Doug

  6. #6
    Forum Member Gillette's Avatar
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    Mar 2019
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    Hi Sandpiper and welcome to the forum. It's a terrific place for support and understanding. There is so much knowledge and experience on here and members are happy to share.
    Dina

    Trying to keep positive, but not always managing.

  7. #7
    Forum Member
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    Feb 2019
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    Hi Sandpiper and welcome to this very friendly forum. I am sure you will find lots of help and advice on here.
    Best wishes
    Sheila x

  8. #8
    Forum Member Barry52's Avatar
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    Mar 2012
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    Newark on Trent
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    Hello and welcome Sandpiper.

    Sorry to hear of your diagnosis but you will find friendship and advice from our “family”. Like you I enjoyed gardening but now I sit outside with the Sunday papers and watch my wife do it.

    Enjoy your scooter as it will give you some independence. I used to belong to a walking group and now I join them for a “scoot”.

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

  9. #9
    Forum Member Lynne K's Avatar
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    Nov 2017
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    910
    Hi Sandpiper, welcomme to our forums. I'm sorry that you find yourself with us on our horrid journey. But we all try to stay positive and not dwell on what we can no longer do. It sounds like you will be the same. Everything that we manage with increasing effort does take longer and longer. I'm still coming to terms with allowing for that fact in any plans that I make.

    You have found a very supportive helpful group. Take care, Lynne
    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.

  10. #10
    Forum Member nunhead_man's Avatar
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    Jul 2017
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    London
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    Hello and welcome Sandpiper

    Catching up from the back as usual , so able to say I agree with everything said above!

    In particular, you may find things here that you will not find in your local support team, although it sounds like you are lucky family wise and locally?

    Details of eye gaze for example , and personal road test results from wheelchairs.

    And I like the line about about time being a great healer - not!

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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