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Neuro Rehab Community Team (Physio) visit yesterday💙

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    Originally posted by Ellie View Post
    ShelleyMarie If he isn't already on it, maybe also ask about Carbocisteine, a medicine which can help thin secretions, making them easier to cough up (with or without a cough assist device) xx
    He is already on Carbocisteine. Appointment yesterday, decline in all areas. They are admitting him today for sleep study / training NIV and cough assist. Got home yesterday and Doug had a strange turn, rolling eyes, slurring speech, nausea. I genuinely thought he was having a stroke. Phoned an ambulance approx 8 pm - by midnight, still not arrived and after managing to get some fluids into him, he became more stable. Thinking he may have been dehydrated from the day at hospital. Went to bed and then woken in early hours by ambulance crew querying why we’d cancelled. Therefore, even more tired.

    anyway, we’re off to Papworth today. Fingers crossed these things will begin to help him.


      ShelleyMarie sounds an absolute nightmare day & night. Hope today is better & less stressful🙏xx
      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


        ShelleyMarie Hope Dougee has a comfortable night tonight - send him our best.

        And you try to have an early night! 👍😘
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.