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MND is very sneaky!

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    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
    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

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      #3
      Many thanks Debbie!

      Doug x

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        #4
        Hi Doug

        I haven’t 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 can’t 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 I’ll do when my arms fail. I’ve been holding off having a ceiling hoist fitted due to this COVID-19 ( I don’t want people in the house) but I think I’ll 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
        night time NIPPY, cough assist, PEG (not currently used)


        Today is the tomorrow I feared yesterday

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          #5
          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!

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            #6
            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.

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              #7
              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!

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                #8
                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 it’s still a struggle for him. Every little helps though.

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                  #9
                  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 Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #10
                    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 I’m only 8st and 4”11 so it can be a bit of a struggle.

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                      #11
                      Jo Jo, maybe needing a hoist is soon needed. If you’re struggling now it would be of use. A sit to stand one would probably do the job. Other people on the forum know more about this subject than me so I won’t be offended by other suggestions. Love 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.

                      Comment


                        #12
                        Thanks Lynne, hopefully when his OT is able to visit again she maybe able to help us out with something. It’s hard to believe this time last year we hadn’t got a clue there was anything wrong.

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                          #13
                          Jo Jo, my local hospice OT got me an Easy Track over bed hoist 2 weeks ago as my community OT isn’t allowed to visit, Easy Track doesn’t require to be attached to walls or ceiling, has a maximum user weight of 28st ask about it, it’s been my saviour and hubby’s back is thankful too
                          Last edited by Hayls; 24 May 2020, 14:00. Reason: Finger twitching

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                            #14
                            Jojo, you need to consider yourself too - if you injure yourself, you'd both be in trouble, your partner would have nobody to help him. and you'd be laid up with a back injury You're in this together, he doesn't get to call all the shots...

                            If the OT can't/won't visit, perhaps do a video call or a phone call and the aids can be delivered to the house.

                            The issue with the standing hoist is that he stills needs to be sat at the edge of the bed, meaning no change on what's currently happening and the full (overhead) hoist really needs access from both sides of his bed to put the sling on, particularly as you're so petite.

                            If he can shuffle his bum or turn on his side, with or without help, a slide sheet can be put under him which makes the pivot easier.

                            Either way, it does sound like some changes need to be made which may be difficult to swallow. Many of us have been there and it's not easy, I'm sorry.

                            Take care.

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Thankyou Halys and Ellie I will certainly be asking the OT about this after the bank holiday.

                              Comment

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