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    #1

    Just in case kit

    My husband has recently had a bit of a aspiration choking lasting on and off for two days intermittently, I contacted district nurses who visits occasionally to check pressure areas and she is going to arrange for the “Just in case Kit” with GP. He has been more settled today thankfully. He uses NIV at night but yesterday he used it during the day which seemed to help with the “ choking”. He is unable to cough up, and he had mucous coming from his nose. I can only think this was was the only orifice the debris could come from due to not being able to cough.
    Has anyone else got the “ just in case kit”. It’s for carers to administer sedatives if person becomes very anxious and other meds for nurses and doctors to give ie pain relief. Secretion relief.
    just to remind those who may suffer similar symptoms ( hopefully not) the NIV really helped plus 1mg Lorazepam.x
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    #2
    Piglet Does he feel he needs to cough up mucus or is the coughing solely due to him aspirating? If he feels that he needs to cough up secretions, meds and/or a nebuliser make them looser, then a cough assist machine and a suction machine bring up the mucus and get rid of it.

    Is he aspirating on saliva?

    I'm so glad the Lorazepam worked wonders. xx
    ​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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      #3
      Ellie I think it’s due to the aspirating, but will monitor this Just in case. He had been asking for cheese on toast for several days which I said wasn’t a good idea. I relented two days ago and he kept saying a bit of the toast was lodged at rye back of his throat.
      I think that’s been the culprit😦 No more toast xx

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        #4
        Piglet I've got the same just in case kit. the lorazepam helped me when sleep deprivation hit me. The oramorph helps with the breathlessness. I have now got my nebulizer with hypertonic solution that I use twice a day. Straight after nebulizer I use my cough assist. It took me weeks to get this right but I do feels lots better for concentrating on it. Maybe ask for a respiratory appointment.

        Ellie you are so right re hydration. I just wasn't having enough fluids. Now I have 500ml via peg x 3 times a day. Plus 2 glasses of pineapple juice.

        x
        Last edited by shelly21; 17 August 2022, 07:16.
        Diagnosed May 2021 bulbar onset als.
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          #5
          shelly21 thanks for that. Didn’t realise oramorph helped with settling breathing. Are you able to administer that yourself or via nurses/ Gp. Yes think we are due a respiratory review. Xx
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            #6
            shelly21 At least somebody listened to my nagging 😉😁

            On the recent hot days, I filled empty feed bottles with water and ran an extra litre through my feeding tube using the food pump. And, do you know what, I needed no extra bathroom trips than normal, which is telling. xx
            ​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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              #7
              We have the just in case kit, but if needed have to be administered by district nurses or ambulance or GP etc as they are vials that need a syringe and no syringes supplied - and I wouldn't know how....
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

              Sense of humour intact throughout.

              Sadly passed away peacefully 2/9/22

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                #8
                Piglet I can take upto 4 doses of oramorph. Only small doses so yes I can self administer. Its in liquid form.
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  Piglet Yes, Oramorph is great: just a drop or two under the tongue works quickly on breathlessness and bouts of coughing. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                  ​

                  Comment

                    #10
                    We also have a big bottle of oramorph.
                    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                    Sense of humour intact throughout.

                    Sadly passed away peacefully 2/9/22
                    • Likes 1

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                      #11
                      MMG its only 1ml of a syringe of oramorph for breathlessness well for me anyway.
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        I though Oramorph was to be given by nurse or doctor. If not that’s good to know. It’s awful watching him trying to cough when he can’t. Thanks xx
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                          #13
                          Originally posted by Piglet View Post
                          I though Oramorph was to be given by nurse or doctor.
                          No, unless the label specifies so, but take or administer it as prescribed. xx
                          ​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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                            #14
                            Oramorph is to be given via PEG as required. Currently @ 1ml per dose. Not used much at the moment.
                            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                            Sense of humour intact throughout.

                            Sadly passed away peacefully 2/9/22
                            • Likes 1

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                              #15
                              Well today there was a knock at the door and two doctors came to assess my husband due to recent concerns re choking episodes. Ther were lovely and checked his chest, bp and oxygen levels. There was no evidence of any chest infection(which I knew wouldn’t be), his sats were 92 which is normal for him. They said they were satisfied that he is relatively ok so said he didn’t need the “anticipatory kit”.
                              Not sure how severe you have to be to get it!! The purpose of the drugs is “ is just in case” or in “ anticipation. I am pleased that he doesn’t need them but thought we should have them here at home(just in case)
                              Any thoughts on this? Xx

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