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Calling for help - in the night.

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    Calling for help - in the night.

    We've had a fairly good system up to now, hubby called me by pressing on a doorbell I placed in his hand or pressing the pager on his possum system.
    However this past couple of nights he hasn't been able to do either and as he's on ventilation and has no voice he has been completely stuck and I've found him very distressed and in a lather of sweat.
    The good hand is showing a lot of spasticity so no use there.
    I'm hoping somebody has a good idea on how to call for help.

    #2
    Tricky.

    Maybe something based on the interruption of a beam of light or infra red.

    This is possibly a challenge the engineers at your local REMAP branch might like to take on.

    Doug

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      #3
      Can you contact SALT team and stress urgency of assessment ?What an awful situation for you both but sure members on here will come up with how they cope in similar situations.
      Its a situation I dread.Please give feedback if you get useful advise .
      Best wishes
      Mary

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        #4
        I'm sure we have discussed this before but I could be wrong. I think elbows are involved. πŸ˜‰πŸ˜πŸ€—πŸ˜xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          I'm sure Ellie mentioned an alarm on the NIV machine- might mean being able to dislodge the mask to trigger?...I assume the respiratory team can set this up?
          Apologies if I've got this wrong....it was in a recent thread.πŸ‘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            I still have ability to talk however recently we use baby alarm system(/ just in case).So if I want to go to bed earlier than hubby we put it on.He can then see me via the monitor.This is useful only if hubby is awake .For example when I have an afternoon nap he can see when I am awake .Also I have a pager which is worn as wristband which I press and then hubby carries the monitor which vibrates to alert him I need assistance( useful if he is in the garden as tended to put mobile phone down and forget where it was!)

            Thought info might help somebody .Best wishes
            Mary

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              #7
              Thank you Mary

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                #8
                Music man's wife Can Music Man turn his head to one side? I have used the doorbell, velcroed to my pillow, in the past (it used to wake the kids too, so I discontinued it before this year's exam season!)

                I can create an air leak on my NIV mask by yawning like a hippo, automatically triggering an alarm on the machine - not a special function on the NIV, just a standard alarm.

                If he has any movement anywhere, a sensitive button switch can be linked to an alarm, buzzer or call bell system, with or without a baby monitor to relay the alarm - maybe start with his OT?

                If people don't know what a button switch is, it looks like this, about 5cm diameter: (aka buddy button)

                Buddy Button.jpg
                ​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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                  #9
                  I was given this a couple of years ago, after a fall when Steve was fast asleep after a couple of minutes in bed. I was following him. It’s very loud, can be pinned to clothing and pressed gently by any part of hand, arm, elbow etc and would wake the people upstairs as well as Steve so I don’t use it. But sometime in the future I might. Lynne x
                  You do not have permission to view this gallery.
                  This gallery has 1 photos.
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

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