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    Sleeping

    Ann and I have been on a 5 year journey with MND during which time as you will all know through your own journeys we have as a team had to face and overcome many challenges. Now as we get very near to our journeys end we are facing our toughest problem yet and one which I’m hoping you can help us with.

    The past couple of years Ann has been waking every couple of hours calling out to be turned or at least have her legs repositioned. The issue is that despite having moved back into the same bed I no longer hear when Ann disturbs. Well I do eventually but Ann says it can be up to an hour after she first disturbs. This is causing enormous stress and anxiety to both of us. We have tried many different types of medication but none have worked. The view from the medical team is that we need overnight support however this is something that I really don’t want and in any event is only being offered on an adhoc basis which to my mind would only be putting a sticking plaster over the problem rather than solving it.

    So to my question. Have any of you good people had and solved similar issues. Any help would be very much appreciated.

    Thanks Phil

    #2
    🤔 Can I start by asking what mattress and bed Ann sleeps on and maybe the issue could be adressed by making her comfortable so she doesn't feel the need to change position.

    Can Ann pinpoint why her legs need repositioning - pressure on heels, hips or a restless feeling etc? (I have dreadful restless legs and couldn't sleep without meds for it)

    Has she tried gabapentin or amitriptyline?

    Love Ellie. (fortunately sleeping soundly @5am, unlike you 😏)
    ​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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