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Thread: MND is very sneaky!

  1. #1

    MND is very sneaky!

    While I was looking one way, monitoring changes in what I thought was important - decreasing ability to walk, weight loss, hand and arm strength - MND sneaked past and I suddenly discovered I was struggling to turn over in bed and to cough properly.

    It never gives up.

    Stay safe!

    Doug

  2. #2
    Forum Member
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    May 2018
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    383
    Hi Doug,

    So sorry you've been noticing changes. I agree how sneaky MND is ( that's a polite word !) .. We are looking for changes we expect and an then unexpected one crops up. I cant turn In bed , like you , and it is hard to get advice on equipment at the moment.

    Its lovely to hear from you, however. We have all gone a little quiet on here recently, maybe because there has been so much hard news this year. I will try to post good news soon on Dinas thread.

    Take Care and stay safe,
    Love Debbie x

  3. #3
    Many thanks Debbie!

    Doug x

  4. #4
    Forum Member AndyB's Avatar
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    May 2017
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    Hi Doug

    I havenít been on this forum for a while, but I came on today and saw your post and it struck a chord with me.

    I too increasingly struggle to turn over in bed. I no longer have any use of my legs, I canít even stand now, and my hands and arms are becoming weak too. I sleep in a hospital type bed. I have to reach down and grab the frame of the bed and literally haul myself over. Not sure what Iíll do when my arms fail. Iíve been holding off having a ceiling hoist fitted due to this COVID-19 ( I donít want people in the house) but I think Iíll have to get it done soon.

    As for the cough, yeah, me too. My breathing is fine but I struggle to do a proper forceful cough.

    All I can do is keep smiling.

    Take care Doug

    Andy
    Sporadic MND/ALS - Limb onset - Diagnosed May 2016

    Today is the tomorrow I feared yesterday

  5. #5
    Forum Member
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    I’ve got side rails fitted to my hospital bed and use these to haul myself over. I also have Wendylet sheets (Provided by my wonderful OT). These have a slippery fabric down the centre which helps me to slide as I turn. Sounds a bit dangerous but it’s not!

  6. #6
    Forum Member
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    May 2020
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    I agree with a couple of the previous comments - turning over in bed was one of the first things I struggled with. Then came a sense of imbalance when I managed to (eventually )drag myself out of bed in the morning. My OT has arranged for me to be provided with a support which fits under the mattress and enables me to get up somewhat quicker. Otherwise, my time spent getting up would be getting longer every day. Every little piece of equipment helps and I am very grateful to my OT. Because of the virus we have never met, but communicate by 'phone or e-mail. Now when I go out and clap for the NHS, it is not just for my son and daughter-in-law (both of whom have recovered from the virus and are back at work), but also for my OT.

  7. #7
    Forum Member
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    Dec 2019
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    Lichfield
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    My diagnosis is still not with me yet. I have weakness in my left limbs, and turning in bed is now difficult. I had a physio visit last week and she offered a support arm but as I am about to move home I rejected it. My new home is in a different NHS area so I will be visit by a new team. I agree that MND is sneaky, found that after my left leg let me down to the floor and then found getting up was very difficult!

  8. #8
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    Oct 2019
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    My partner has had a inflatable lift by his OT that fits under his pillow in bed and inflated to sit him up when getting out of bed. It helps but itís still a struggle for him. Every little helps though.

  9. #9
    Forum Member Ellie's Avatar
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    Oct 2012
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    Jojo, if he struggles getting out of bed, would your partner consider getting a profiling/hospital bed?

    I know they're not everyone's cup of tea - I resisted for a long while myself!! - but they do make life physically easier for all involved.

    Would a slide sheet and/or grab rails be useful, I wonder?

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

  10. #10
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    Oct 2019
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    He has been offered a hospital bed but due to it being a single he is reluctant to have one as he would have to sleep on his own. He has a grab rail but is loosing strength in his arms so I pull him round one the inflatable has sat him up. He is 18 st and Iím only 8st and 4Ē11 so it can be a bit of a struggle.

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