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    Scary moment

    For a while now my left hand has been my strongest hand until today. I must have over did it with my meds as at the end I couldn't push the clip on my tube into the locked position. Thankfully after resting it's back to as good as it was when my day started. I can only surmise that the end may come soon. I will say goodbye when the time comes. ๐Ÿ˜‰๐Ÿค—๐Ÿ˜๐Ÿ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    Yeah, a rest can work wonders!

    Aren't nurses supposed to pop in and out to do your meds ๐Ÿค” ๐Ÿ˜˜
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #3
      They refuse to do it until my all my meds are locked away and they hold the key. I'm livid. Hopefully I'll get a PA soon. x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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        #4
        I'm the same Matthew re left hand. I've had my issues all right sided until a week ago when u began dropping things from my good hand. I've also started get spasms in left leg so looks like its now spreading to my left side.

        I can't do my own clip up using my right either. But I am a little bit behind you in diagnosis and not using my peg for feeding

        I am shocked re the locking away your meds. Is it a liability thing maybe?.
        Diagnosed May 2021 bulbar onset als.

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          #5
          I suppose so but as I'm terminal I don't understand it. x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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            #6
            I think its down to the fear of being liable if you took an overdose. Once in your care they have a duty of care. Make sense?
            Diagnosed May 2021 bulbar onset als.

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              #7
              Originally posted by matthew55 View Post
              They refuse to do it until my all my meds are locked away and they hold the key.
              ๐Ÿ˜ฑ๐Ÿ˜ฑ๐Ÿ˜ฑ๐Ÿ˜ฑ For once, I'm speechless...


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

              โ€‹

              Comment


                #8
                It would if they hadn't been doing it until the office management changed. Sooner I'm rid of them the better. x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                  #9
                  Originally posted by shelly21 View Post
                  Once in your care they have a duty of care.
                  Funny how they can pick and choose what constitutes danger to you matthew55 isn't it - no access to your meds Sir, but yes of course you can walk up and down your stairs... xx
                  โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  โ€‹

                  Comment


                    #10
                    Bring on the PA xx
                    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    โ€‹

                    Comment


                      #11
                      Self-administered medicines


                      Some people will be administering medicines themselves. You should store these medicines as identified in the personโ€™s risk assessment. For example, this could be in a lockable cupboard or drawer in their room.

                      People should be able to access any medicines that they need, when they need to take or use them. You must make sure that other people do not have access to these medicines.
                      Secure storage

                      The quality commission state above when care is given in a residential setting.


                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        I know that the care industry had a massive issue with critical mistakes re patients who mixed up their own drugs but you are capable mentally to choose when to take your own medication. Maybe email your local care commission and get clarification.
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          Originally posted by shelly21 View Post
                          Self-administered medicines


                          Some people will be administering medicines themselves. You should store these medicines as identified in the personโ€™s risk assessment. For example, this could be in a lockable cupboard or drawer in their room.

                          People should be able to access any medicines that they need, when they need to take or use them. You must make sure that other people do not have access to these medicines.
                          Secure storage

                          The quality commission state above when care is given in a residential setting.

                          But Matthew isn't in a residential care setting, he is in his own house... ๐Ÿค”

                          I don't know the rules though, only to say that I feel lucky that I'm treated as an adult, not that I can get into my meds cupboard, let alone open a bottle and self-administer meds ๐Ÿคฉ๐Ÿ˜
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

                          Comment


                            #14
                            If someone has the mental capacity to administer their own medication and they choose to....then they do.
                            However if a domicilliary care agency is requested to administer medication to a person then they (dom care agency) will have their own medicines policy. This may include a locked medicines cabinet.
                            In the L.A. where I work the care agencies we commission follow our medication policy...it's what they sign up to across the board.
                            If your paying someone privately as a carer then that's another ball game๐Ÿ˜‰

                            We wouldn't specify a locked cabinet unless there was an issue such as the person is living with dementia and there's a risk of overdose etc
                            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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                            Comment


                              #15
                              Ellie it means in a residential setting. Basically his home. X
                              Diagnosed May 2021 bulbar onset als.

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