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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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    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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    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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    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.

  6. #26
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    Love the hydrotherapy & music idea - will ask about those as I know my MND clinic venue offers some complimentary therapies. I used to sing a lot and really miss it. So this might be a good alternative! Like you, Iím determined to get as much out of life as I possible, & learning to appreciate what I can still do - while I can!

  7. #27
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by SarahWP View Post
    Love the hydrotherapy & music idea - will ask about those as I know my MND clinic venue offers some complimentary therapies.
    Hello Sarah,

    How are you? - I hope you are continuing to make a good recovery after your fall.

    Hopefully your MND clinic will be able to arrange for you to have any complementary therapies you are interested in (and, as mentioned in the following factsheet, many local hospices can also offer us a range of different therapies too).

    Link to MNDA Factsheet 6B about Complementary Therapies:-

    http://https://static.mndassociation.org/app/uploads/2019/06/17170124/06B-Complementary-therapies.pdf

    Best wishes to you and Sue,
    Kayleigh
    Last edited by Kayleigh; 25th October 2019 at 22:47.

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