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Thread: Limbs suddenly much heavier. Need tips to cheer me up!

  1. #21
    Forum Member Gillette's Avatar
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    Hi Sarah, apologies for not being supportive of you but I couldn't think of anything useful to say - too selfishly distracted.

    It sounds as though you and your wife are taking sensible steps to keep you safe - very wise.

    Best wishes to you both.

  2. #22
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    Sep 2019
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    I love this forum! Everyoneís so lovely. 💕

    My physiotherapist is coming on Monday with 2 Zimmer frames, which she said will be better for me for around the house (Iíll have 1 for upstairs & 1 for downstairs). I have a 4-wheel rollator for out & about too. Amazing help here in South Wales.

    Have a great weekend everyone - the sunís finally out here! ☀️👍😀

    Diolch,
    Sarah xx

    (By the way, Iím not a Welsh speaker - i just know a few words! Iím actually English but love Wales - this is my home now. I even support them in the rugby! 🏴󠁧󠁢󠁷󠁬󠁳󠁿 🏉 &#129315

  3. #23
    Forum Member Ellie's Avatar
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    Oct 2012
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    That's great to hear Sarah.

    It's a good idea to double up on some pieces of equipment for upstairs and downstairs.

    Glad to hear you're well looked after by your community services.

    Stay safe now!

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

  4. #24
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    Aug 2019
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    Hi Sarah... I was diagnosed in June, so a bit after you... some of the things that have helped me physically and emotionally are that MND nurse organised me to have hydrotherapy with a pool physio... its so lovely and warm and really helps my muscles to be flexible.. tho i can't do anything the next day,, but that's ok.. i conserve energy and use it when i can. I also had six sessions of music therapy - which was amazing.. a one to one with a music therapist.. we laughed and cried (well, i did)... I've also just got a cleaner in as i live alone and cannot do much and just got a mobility scooter to help with getting out and about locally and around the supermarket... I also had a short holiday with a friend last week to Ljublijana - and the assisted travel was great in both airports and i rented a mobility scooter so i could get around. It was fantastic as it gave me such freedom and I thought, my life is not over... for me its learning to do what i can within the ongoing limitations. still waiting for stairlift etc... that is SO slow ... i hope some of these ideas encourage you to find out what is out there to help you and know that there is life with MND - but not as we'd like it to be, i know. It sucks...

  5. #25
    Forum Member Gillette's Avatar
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    Good news about the 2 zimmer frames, Sarah. I'm really pleased for you that you have good services - it makes life so much easier and smoother.
    Dina


    Trying to keep positive, but not always managing.

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