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Getting off the loo

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    Thank you all for your kind reply. The doctor visited me today and has arranged for me to have a night carer on Friday Saturday and Sunday night this week . She is also looking into a suprapubic catheter and an anti- depressant. I have requested a teatime call from the carers to stand me up so I can go to the loo. The district nurses also called but could not offer me anything to help with the bed situation but my OT is visiting on Monday. I have been looking at those silky sheets and maybe I will try them. I was wary about going down the airflow mattress route as I know many of my patients in hospital find it difficult to move on them as they're squidgy. I have a standard Soft Foam mattress on at the moment but it is so hard. I have put a mattress topper on top to try and soften it and also so I can use my electric blanket as I get very cold. I would not
    be able to use an electric blanket with an airflow mattress, how do you keep warm?

    I have had a recent respiratory assessment which was fine but I do struggle when I'm lying flat or I get in a stew. Ellie I want a bladder like yours, I'm trying to train mine, but it does it's own thing.



      Well done KC, good progress. The carers will be a great help for you and your family. Dude x


        Great news on the carers Elaine - that'll be a relief !

        I have used the leccy blanket with my air mattress for years without a problem. It's under the cover but heat gets through. You could try a mattress to see if it hinders your movement, setting it at a higher weight makes it firmer.

        Re breathing: pulmonary tests such as spirometry, should ideally be done laying down for ALS people, as this gives a truer result. SATS too vary between sitting & supine position. There's a simple overnight pulse oximetry test which you should do to see what your overnight O2 levels are - really, if you're having breathing issues, a BiPAP will make it more comfortable. Ask your MND Nurse about the SpO2 test.

        Sorry to bombard you w/ all this!

        Hope you sleep tonight,
        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


          Hi KC . I have a sheepskin to rest my feet on coz i was getting pressure sore , maybe try one under your hips. Real on not faux. As Ellie says oximeter on finger records Co2. Be aware of headaches in the morning, sign of high Co2. May need niv. Dude x